LDN for MS

Cool is cool

2011-10-15T13:17:00.003-05:00

I gripe a lot about heat intolerance, a symptom shared by the vast majority of MS patients, and especially about the unprecedented heat and drought we've been dealing with here in Texas. It's a really big deal for people with and without MS. Time Magazine says that "Texas' drought may have global effects".

Anyway, I just wanted to say that FINALLY it's eased up. We broke all kinds of records but it hasn't been over 100 degrees F for over 2 weeks. Whew! Some days we don't even hit 90.

It even rained. (Once.)

So I'm cool now too. I can go outside and sit. I can think more clearly. I have choices. I can do errands and not have to return to an oven-on-wheels. I'm not stuck inside like a salad in the fridge. I feel so much better.

StaCool Vests

FYI, if you are sidelined by heat intolerance, there is personal cooling equipment available (vests, wrist and ankle wraps, etc) available to MS patients. They say that wearing a cooling vest can enable a heat-intolerant person to participate in aerobics or outdoor activities involving exertion. Check with the MS Association of America; or you can call the M.S.A.A. at 800-532-7667 for information.

There are also numerous for-profit private businesses, like StaCool, offering self-cooling products, private-pay. Just Google "cooling vest for multiple sclerosis".

Personally, I use ice packs, or just plain old ice in a bag. But the vest would probably be better. Somebody try one out and let me know, OK?

Chill!

On MS and Memory Issues [or, OMG I Forgot To Reorder My LDN!]

2011-09-05T12:14:00.009-05:00

I try to keep up with things, I really do. I hate screwing up. Carelessness pisses me off whether it's in me or in others. I especially hate wasting other people's time and resources by messing up and forgetting something- that's the worst.

I know, we all blow it from time-to-time. But for about 10 years now I've been busily forgetting things roughly from the time I wake up until the time I fall asleep. Which makes me feel like a total screw-up, but I try to remember to forgive myself each time I mess up, although it's hard and not always possible if I've blown it badly. But at least I resolve not to repeat the same mistake again if I can possibly help it.

Meanwhile, I make these over-the-top memos for myself- obsessively well-formatted signs and notes, usually illustrated to some extent, and sometimes I even laminate the silly things! But I still sometimes forget to look at them.

One of my silly laminated reminder signs- helps out on watering day

Posted on a sliding glass door, to remind me not to let Claude the Blue Lacy (my dog) out while thirsty wild critters are visiting

I used to rely heavily on my cell phone's alarm feature for reminders, but unfortunately the alarm stopped working reliably months ago, so that's that until next year when I'm eligible for a new phone. Which brings up another issue I've been wondering about; am I smart enough for a Smart Phone? Well, maybe. Just barely. I have to admit I dread learning how to use tricky new things...in fact, I avoid it; way less stress. I know, it sounds lazy, but you know what they say; no pain, no pain.

See, my memory trouble usually arises when I try to hold a simple thought or plan in the back of my mind while I attempt to do (or just think about) something else.

It's really just simple, two-layer multi-tasking, which was never a problem for me before MS. But trying to hold a thought in my leaky brain now while focusing even temporarily on something else hardly ever works, and I guess I've adapted to it by not attempting it if I have a choice. And luckily, most of the time I can still manage to recall in time that I'll probably never keep things straight if I try to do more than one thing at a time....

So what to do?

Well, my first line of defense when I realize my brain is getting overwhelmed is to stop everything and focus on just the most important thing, whatever that is at the time. (Usually simply updating my calendar takes care of it.) The rule here is relax and take one thing at a time. And above all, I don't let myself get stressed. Keeping things loose, light and easy has become the most normal, natural response for me. Life's tricky enough without riding your own back all the time, right?

Don't get stressed; keep it light

After all, I'm not on a deadline-I can afford to take a break and resume whatever it was when my head clears.

The commonest multi-tasking situation that arises in my life these days that gets me overwhelmed is on ancestry.com.

So far I've got almost 15,000 people dangling on my family tree, going back past Saint Constantine, Emperor of the Roman Empire (my 43rd great grandfather), and I've got 17 other, much less complicated trees working as well. This genealogy stuff really interests me and is a perfect challenge; for one thing, I learn a LOT of stuff.

But connecting one family tree to another on that site involves multi-tasking on a level that would have been a challenge even before I got MS, so I've found it best to work on this stuff a little at a time. More importantly, I've learned to let it go gracefully as soon as it gets too complicated. Just let it go. When I get stuck like that, typically I have several Windows open at once with info I'm trying to compare and consolidate.

Inevitably there's a point where there are more levels than I can even see at once, if you know what I mean, and I almost feel something shorting out in my head. Not literally, but that's when I know I've tried to go in too many directions at once and have, understandably, lost my bearings....at which point I just close everything and take a break. Maybe I play a bit of Tetris or something; pretty much anything off the ancestry.com site. As long as I avoid anything that demands complex multi-tasking for awhile.

In circumstances when I have to manage to juggle two things at once, I employ what I guess you'd call a "memo-mantra", sort of a chant I literally mutter to myself unceasingly ("the water's running, the water's running, the water's running, the water's running") until I can, you know, turn off the water or whatever.

It's like the back of my mind has this very steep, slippery shelf off of which things always tend to roll... off into a void. I have to work hard to hold that extra thought on the shelf and it doesn't always work. Usually I find it best not to attempt multi-tasking in the first place. Like I said before, one thing at a time.

Along with my inability to multi-task, I also noticed (starting almost 10 years ago) that I'd become a klutz; all I've really figured out to do about that is to move very slowly and deliberately so as to avoid wrecking things. It doesn't always work by a long shot, but it's all I got.

And OMG the most frustrating thing is that I lose things all the freaking time! I spend a huge amount of my time looking for stuff that I swear I just freaking had! It's maddening!

And I'm always forgetting what I was saying, which is just more multi-tasking FAIL.

I often wish my life had TiVo, so I could push a button and go back to find out what the heck I just thought of and so quickly forgot. (Uh, what was I just saying? Crap. I know it was important...oh well...)

In fact, memory problems were the main thing that motivated me to get a head scan in the first place, the results of which led to my MS diagnosis.

I was doing medical coding in a family doctor's office when all of a sudden I found I couldn't remember the code for hypercholesterolemia (it's 272.0), an ICD-9 code I'd used countless times every blessed working day for years, but all of a sudden I couldn't think of it.

I felt so freaking stupid.

I was pretty sure about the numbers involved (I thought there was a "7", a "2", and a "0", with a decimal point after 3 digits and then one of those numbers repeated after the decimal), but I had no idea about the order of the digits.

Finally I actually had to look it up, which was on par with forgetting how to spell my own name. It was, "OK, I want a head scan and I want it now!"

Anyway, if all else fails, a sense of humor helps immeasurably as your marbles slowly roll under the fridge where you'll probably never be able to find them again....

My most recent screw-up involves my LDN. I was taking my bedtime meds night before last when I came across a little card in the slot that said "Need LDN".

Shitshitshit! I was supposed to order a refill on the 1st when I got my check, but I totally spaced it out. (Insert more cursing...)

Obviously I should have thought to put that little "Need LDN" reminder card in a slot that I would have seen several days before I ran out, in time to get a refill, instead of on the night when I'd be out already. Oh well, another lesson learned.

Anyway, as of two nights ago, I've been off LDN because I'm out, and I won't have any to take until at least Thursday or Friday, maybe later. The compounding pharmacy I use is closed until tomorrow because today is Labor Day. They'll send it (Priority Mail) because Aurora Illinois is too far from Austin Texas for a routine road trip to pick up a refill....(duh)

Well, hopefully my immune system won't notice the oversight. (Ha! Good luck with that, right?)

The only other time I couldn't get my LDN for a week or so was back in '05, and I wound up with an exacerbation involving a world-class case of labyrinthitis. I literally had to hold my eyeballs still with my fingers! I was left with chronic dizziness.

I'm hoping this week's brain fart won't lead to any permanent drama; meanwhile all I can think of to make more endorphins while I await the refill is to exercise- so I'll go to the gym later to work out....if I can remember to go...

Oh crap, I just realized that they're closed for Labor Day too! (Insert more superfluous cursing referencing feces)

Oh, and speaking of meds (well, I was, remember)....obviously it's important to remember to take them, and I have to remember to take a small handful of meds and supplements twice daily. So I've found that the simplest, surest way is to set up two weeks' worth of my meds at a time, which I store in two clearly and heavily labeled, slotted trays; one tray for morning, the other for bedtime.

This is not a foolproof system, but at the very least I can say that every screw-up has led to a new innovation and fewer mistakes afterward.

For example, I found it helpful to make little cards with the days of the week on them to put into each little slot, so I can tell at a glance whether or not I've taken my meds yet; otherwise I have no idea. None.

Bedtime Med Tray


Inside the bedtime med tray

Morning med tray

Inside my morning med tray

I've shared all this silly minutiae not because I imagine it's interesting to anyone, but in case you're dealing with similar issues. At least know that you're not alone if it's any consolation, and that there are ways to manage things if you try. Hang in there, and hey, if nothing else, work on developing that sense of humor!

Sometimes in life, whether you have MS or not, whether you have memory problems or not, it helps to think creatively and to be ready to improvise, to let go and go with the flow. I've learned that I can't afford to be too attached to things the way they are; attachment brings even more suffering to MS patients than to most people.

Be flexible. Make plans, but make 'em in pencil.

Coping with a Long Hot Summer

2011-09-05T11:41:00.005-05:00

Eight years ago when I was diagnosed with MS, I was living about a half hour west of Austin on 10 acres with a beautiful view, lots of wildlife, wildflowers, woods, fresh air and quiet....but no running water and no a/c or heat.

I was 52 and roughing it was getting old, MS or no MS. I dealt with the summer heat and the ongoing lack of running water partly by showering at my gym every day. And swimming in Barton Springs Pool, a sacred swimming hole in Austin that's a brisk 68F year around- very refreshing. I was still rehabbing myself from a back injury, and was a fanatic about working out and swimming laps. My exertions were slow and steady, never intense (a turtle literally passed me in the pool one day), but it felt so good and kept me moving, and cooled me down very effectively.

Out-of-towners tend to shriek when that icy cold spring water hits 'em...

Elevated body heat - sometimes even a fraction of a degree- can be a real problem for MS patients. Most of us do best when kept cool.

Here in Austin we're experiencing the hottest summer on record, as well as a truly brutal drought. The average high temp in August was 105, 9 degrees above normal.

Personally I suspect we're being punished for electing Rick Perry, the phony-baloney jerk....

I check the National Hurricane Center every day, looking for signs to hope that something might improve; this time of year we look to the tropics....

And the drought...my parents lived through the Dust Bowl and my own childhood memories are set against the Drought of the '50's; "drought" was the first grown up word I remember hearing and fearing .....

....but it was nowhere near this hot back then. Temps have reached as high as 112 this summer, and it's been 106F almost every week, sometimes hotter, and over 100F almost every single day.

If this is the new norm, we're screwed.

Desperation brings a grey fox to South Austin backyard for a drink; cat wisely decides to share

As I count down the days to October (25 days, 5 hours, 15 minutes and counting) when the 3-digit highs will surely be gone for a few months, I have my little strategies; they're not much, but it's all I got...

First, I stay inside (duh). Between 9am and 10pm, unless I have no choice, I stay inside where the climate is controlled to about 75 degrees or less. The cooler it is, the better and smarter I feel, but I can't afford to fully indulge my love of frost.

You know, this Thanksgiving when we go around the table listing what we're thankful for, I really must remember to mention air conditioning, ever though the holiday season makes it easy to forget. I really am truly thankful that I have the luxury of living in a house with air conditioning. Now if I can only think of the right Lotto numbers, I'll move about 1,000 miles north in a New York minute. Seriously. It's not only too hot here, but Texas gets stupider with every election.

Second, I use ice packs (I keep several in the freezer) and drink a lot of icy cold water. Popsicles are a major food group for me this time of year too, and I have a little snow-cone machine for the shaved ice. Love that shaved ice!

Third, I NEVER get into a hot car. That takes planning and sometimes sacrifice (in that I have to decline invitations that would involve my melting.) Sounds silly I guess but it's a good rule for me.

Fourth, I inspire myself with images of cold things. My computer wallpaper features icebergs and glaciers. Hey, it can't hurt.

2011-09-05T11:10:00.001-05:00

MS Patients and Others Against Global Warming

2011-08-24T12:28:00.001-05:00

The Earth is getting warmer, a fact that has never more obvious than in the last few months here in Texas.

In Austin the average daily high temp for this month (August 2011) is averaging over 104F; that's not normal here. Or at least it wasn't. The reality of breaking heat and drought records on a daily basis wins us nothing, not even a plaque; it just sucks.

Yesterday we reached the all-time record for most days over 100 F; the previous record, 69 days, stood since 1925. We'll break that record in a couple of hours, and tomorrow we'll break the record we'll set today, and it goes on and on.

Huge trees that made it through decades of storms and droughts are dying in record numbers, grass and ground cover are turning to dust, farmers can't grow anything but debt and ranchers are as desperate as their cattle.

Doomed Texas cow

We all hope this hellish summer is an anomaly never to be repeated, but it really doesn't seem so when you study historic records. It's a strong warming trend, and the rate at which things warm up is increasing rapidly.

So what does this have to do with MS patients? When you consider that about 80% of MS patients suffer from heat intolerance to some degree (no pun intended), the connection is obvious. We're more negatively affected by heat than most people are; when our body temp rises as little as a fraction of a degree, we tend to experience an increase or worsening of our MS symptoms, particularly weakness. Simple everyday things like getting into a hot car can completely take the wind out of the sails of an MS patient for hours.

The remains of a typical Texas fish in the remains of a typical Texas lake.

As a matter of fact, at this very moment I'm recovering from too much activity in the morning heat. We have water rationing here and today's our watering day,

...so I'd been outside dealing with the sprinkler, adjusting a soaker hose, and hand-watering when it gradually got too warm. Or I got too warm. So I decided it was time to call it a morning (outside activity-wise) and tried to come back inside to cool off but found that I was accidentally locked out. After much banging on windows and doors, my usually flawless roommate finally heard me above his headphones and let me in, absolutely mortified and guilt-ridden, bless his heart. Anyway, I've been back inside with the a/c for about 30 minutes, and as I write this I'm sitting with a large ice pack on my back, fans blowing on me from three directions as I drink ice water. I've stopped sweating and feel much more comfortable now, but I'm as literally limp as I've ever been without general anesthesia. In a few minutes, I'll turn off the fans and set the a/c to a warmer temp as I get on with my day. The thing is, getting overheated like that leaves me limp for hours; I feel like taking a nap but I'm not exactly sleepy, just profoundly weak; my fingers feel weak and stupid as they stumble all over the keyboard; writing this is taking forever.

None of this is a big problem as it used to be since I retired on disability; when I was still struggling to work there was more stress as I tried to fight the effects of Texas heat and MS in general.

Anyway, it occurred to me that those of us who are especially affected by the heat might as well get together and make our voices heard in the fight against global warming.

And yes, I totally get the irony of depending so heavily on air conditioning when it's use indirectly contributes to global warming; it sucks. I don't like needing a/c but dammit I do. I grew up without a/c but that was in the'50's when I was young and healthy and didn't have MS. And although we were in a drought then too, it wasn't this hot. It's never been this hot. But we're doing what we can to conserve energy....and water.

Our current governor, Rick "Goodhair" Perry, who seems to be the leading GOP candidate, says that global warming is a hoax and he will have none of it. (Did that make you feel any cooler? Not me.) He said last Wednesday in New Hampshire that global warming is “a scientific theory that has not been proven.”

In his book, Fed Up! he called it “all one contrived phony mess that is falling apart under its own weight.” (Hey, takes one to know one!)

Of course, Perry also denies evolution and other proven facts supported by not only science but the fossil record, yet ideologically inconvenient to evangelical Christians. He's cast his lot therefore cannot and will not acknowledge anything with which his Tea Party base isn't on board. And many if not most of them are of the belief that the flat Earth is 6,000 years old. (And the Dumbening of America proceeds at breakneck speed.)

How do they manage to make themselves believe the nonsensical in the face of overwhelming evidence against it anyway? Twenty years ago I would never have thought that the mainstream of one of the major political parties in the US would be so proudly dedicated to ignorance and superstition, but there it is.

So as the temp rises and we break yet another record (ta-dah!), Perry brushes his hair back as he waves from his Humvee limo, thinking all this fuss about global warming is all very funny.

Jerkus Texanaus

Maybe another special interest group will appear; "MS patients against Rick Perry"...

T-shirts and Bumperstickers and Coffee Mugs, Oh My!

2011-04-26T13:36:00.002-05:00

If you want to display your support for LDN as a treatment for MS, here are some easy ways to do it:

LDN for MS women's fitted t-shirt from cafe press (shown in pink); small-XL $24.00 ea

LDN for MS bumpersticker from cafe press, $4.50 ea

LDN for MS coffee mug from cafe press, $12.00 ea


LDN for MS white t-shirt from cafe press , sizes up to 4XL, from $17.00; $20 for 2XL-4XL


LDN for MS men's t-shirt (black) from cafe press; starts at $17.00

About Herpes and MS

2011-03-21T13:50:00.009-05:00

First, a quick update. It's late March, 2011 and I'm still doing really well, and of course still taking LDN, 4.5 Mg at bedtime.
FYI, I'm still getting it via Priority Mail from The Compounder Pharmacy in Aurora, Illinois, but there are other trusted pharmacies who have a good track record of compounding LDN properly. There is at least one very good compounding pharmacy here in Austin, Texas, too, but when I asked, they didn't seem aware of the importance of using the correct binder with the Naltrexone, so I stuck with The Compounder; . It costs me a little over $1 per day including delivery; compare that to the cost of the "conventional" treatments!

The only other "medications" I take (relevant to my MS) are supplements, except for Amantadine, all prescribed (or at least suggested) by my oto-neurologist, who believes strongly that herpes is the viral component involved in MS and in chronic inner ear conditions. And I'm doing so well that for the last year, I've only been seeing him every 6 months, to do follow-up testing to reassess my chronic inner ear issues (which are much better), and to maintain my prescription for LDN.

About herpes: While MS is still one of the more mysterious and unpredictable diseases around, most experts agree that there is an important, non-contagious viral component to MS, and many believe that we (MS patients) have a particular vulnerability to herpes infections.

I've never had Herpes I or II, but like many MS patients, I've had a lot of other herpes infections....

To start with, as a baby I had herpes angina, aka herpangina (basically, shingles on the inside of the mouth and throat, very painful); later in life I had it again as well as "regular" shingles (herpes zoster). As a child, I also had chicken pox (but everybody got that before the vaccine), an extraordinarily bad case of mononucleosis (with a severe relapse that was misdiagnosed as Hodgkins Disease), and pityriasis rosea (a relatively unimportant, self-limiting rash, believed to be caused by herpes VI).

Then, as an adult, like most MS patients, I tested positive for the Epstein-Barr virus (herpes IV), and there's my chronic labyrinthitis, which as I said my doc believes is also from herpes, probably herpes VI.

For these reasons, my neurologist, who is very much into Complementary and Alternative Medicine, has me on anti-virals. I used to take Valtrex, which works well, but that was when I worked in a family doc's office and had access to free samples; I can't afford to buy it. I've also been on Acyclovir and Amantadine, now just Amantadine.

Some of the supplements are pretty specialized, like "Neuro-transmitter Support" and "Neuro-Immune Infection Control". Others are generally supportive or immune-supportive, like CoQ10, DHEA, anti-oxidant blend, EPA & DHA, Bio-C complex, etc. (I'm only listing this stuff because I know from experience that people will ask, but I'm not suggesting you take any of it.)

For the last few years, I've been doing so well that I've rarely even thought about having MS anymore, although I realize that it could change; I know that, statistically, I'll probably develop Secondary Progressive MS someday, but I'll jump off that bridge when I come to it. For now, I don't really do MS; its been years since I searched the internet daily for MS news. I'm only updating this now so people won't assume that I died or something!

I turned 60 this year and am hangin' in there just fine. I always hope to hear more about LDN being tested and available, but since no one has a vested financial interest in it I'm not holding my breath....

Well, I guess that's more than enough verbiage from me. While there is no way for me to guess what the course of my disease would have been had I stayed on the conventional treatments, I have no doubt that LDN has made a positive difference for me, and that, at the very least, it's completely harmless. If you have MS, I hope you get a chance to try LDN. Like I've said before, I wish I'd tried it sooner, and that I'd never tried the other stuff....

Update: October 2010

2010-10-19T11:06:00.002-05:00

There's very little to report....it's been over 7 years since I was diagnosed with MS and I'm still doing great. And I'm still taking LDN and nothing else for my MS. I have no interest in trying anything else because this is working so well for me; no major relapses, no new symptoms, nothing ever since I started taking it. I do try to spread the word on this amazing treatment whenever I can, but it's not like I'm around a lot of MS patients. Actually, I don't even know any MS patients anymore and haven't visited any MS websites for years. I do have MS but I don't do MS....it's a boring topic. I wish people luck if they have it, but so far it hasn't affected me that much....so far...

UPDATE: Summer in Austin, Texas

2009-07-05T18:55:00.007-05:00

It's too freaking HOT!

Highs have been well over 100 degrees F almost every single day since May, sometimes up to 107F. Everybody's tired of shattering heat records, of watching lawns and trees wither and die,

and of wearing out our air conditioners.

Where is the fast-forward button?

I can't wait until October...

New Symptom; "Phantom Heat"

2009-06-09T10:33:00.022-05:00

There's actual heat and there's "phantom" heat; most of Texas is dealing with actual heat.

It's not even Summer yet, but it's been hotter than usual (for June anyway) this year, and "usual" is no picnic in Central Texas.

For most of this month, the high temperatures here in Austin have hit 99 or 100 degrees, with little if any breeze or chance of rain. It's early for this level of heat, and it's scary for everybody, not just farmers. At this rate, we'll have highs of 115 for most of August!

I pretty much just hide out in the air conditioning from May through early October; Claude and I go for "walkies" for about an hour early in the morning, but some days it's too warm for me at 7am.

Things might start to cool off in about three and a half months...

Seriously, if I could afford to travel, and if my spine was up to it, I would so be in Canada! I've never been there, but my Dad and his brothers used to go to summer camp in Nova Scotia; he said they had to start every day with a brisk nude swim in the icy cold Bay of Fundy, which remains around 43 degrees F year around.

That sounds really good right now. This time of year, popsicles and ice cream are my main food group and my only defense.

Anyway, to compliment the Hellish weather, I've developed a new sensory symptom that leans into the heat - it feels like there's an invisible heating pad on my right upper back and on the outside of my lower right leg; phantom heat. (Why couldn't this have happened in January?).

Seriously, it feels like heat is radiating both onto and from those areas, but of course the skin actually feels normal to the touch. All this phantom warmth might have been welcome during the Winter, but right now I could do without it.

Still, as sensory symptoms go, it's nothing. I mean, it definitely beats pain, burning, or itching, so I'm really not complainin', just sayin'.

Update: Spring 2009

2009-06-06T09:53:00.014-05:00

Man, this is frustrating! I just spent over an hour trying to write this post, updating things and lamenting the toll my memory problems have taken on my life this week, etc. But when I was practically finished, I screwed up by forgetting to save my post before I went to another page, and now I have to start over! Crap!

(Shit for Brains!- I really wasn't trying to demonstrate how lame I am...)

So, let's see, where was I? Well, of course I still have M.S. (no surprise there), and I'm still on LDN, and it's still working great for me, but the bad news is that I'm running out and am having trouble getting more. OMG!

See, the trouble started when my beloved primary care physician, "Dr. Connie", who'd been taking care of me for over 30 years, closed her practice last Fall and moved to the Texas Panhandle*. (*That's like the Siberia of Texas).

"Dr. Connie" was the doctor who'd provided me with my LDN, but now the refills are all gone and the last bottle of pills will be empty in two days. This isn't her fault at all, it's mine; she left me really well set-up with refills on everything before she relocated. I knew when I won disability that my Medicare coverage would start on the first of May (last month), and naively thought I'd be able to find a female primary care doc taking new Medicare patients, but so far no luck. I've been without any blood pressure medicine for about three weeks now, and might explode at any moment...

Happily, I do still have an oto-neurologist for my chronic inner-ear issues, and since he prescribes LDN for many of his patients, I thought I could go see him and get a script for the LDN. Simple, right? Anyway, I got an appointment for last Thursday, June 4th, and had arranged to get a ride from my friend John. (I'd call him "Saint John" but that name's taken...)

By the way, I guess I haven't mentioned that I don't drive anymore; my near-total inability to multi-task seemed to me like a really bad quality in a driver, so I voluntarily let my driver's license lapse some time ago and have been staying home most of the time. That's me and my dog Claude.

I do have a really nice mobility scooter that gets me around the neighborhood and to nearby stores. At home I have cable, internet, and air conditioning, so I'm content. And John comes over most Thursdays to take me wherever I need or want to go, and that's worked out wonderfully. Thank you, Johnny!

So day-before-yesterday, sweet John took me to the oto-neurologist's office, which is just outside Austin. I would have gone sooner but Social Security had the impression that my name was still my married name from back in the '70's (shudder!) and getting that changed wasn't quick or easy since I had no current I.D.. In fact, I actually had to buy a wheelchair for the process!

See, standing in line is impossible for me because of spinal issues that have nothing to do with M.S. Anyway, gradually I managed to get a new DPS I.D., and another Thursday John and I spent two hours in line at Social Security applying for a corrected card, but I'm still waiting for my corrected Medicare card to arrive. Fortunately it's supposedly all fixed on their website, which was enough for the doctor's office.

Anyway, since my inner-ear issues had been pretty well under control (at least, until recently), I hadn't been to see this doctor for almost two years. So when I got there, I had to start over, undergoing two full hours of hearing, balance, and memory testing before I ever even saw the doctor. After I had made the appointment and before the day arrived, I had a relapse of the vertigo, so that became a primary issue.

Anyway, by the time I finally saw the doc, it wasn't the regular guy after all but a new associate, a nice guy who wasn't very familiar with LDN. (He asked the nurse if it was a "trip-scrip"; I assured him it isn't!) My head was spinning from the testing, and my lame brain was further overwhelmed by all the information I was given; I left the office with a ream of documents, 10 pages just of results from all the testing; bundles of samples of new meds and accompanying brochures (for things like "neurotransmitter support"); orders for labs; a butt-full of cortisone, but until late that night I didn't realize that I still didn't have a prescription for the LDN! That was the main reason I went there, and we did discuss it, but ultimately it sort of got overlooked. When I screw up things like this it can really get me down, but I'm trying to sort of rise above myself...

I called the doctor's office yesterday and left messages starting at 5am, hoping to be able to pick up a Rx for LDN, but they're only open a half day on Fridays and take 24 business hours to respond to calls, so I never got a call back. On Monday morning I'll start yanking their chain again...

The last time I ran out of LDN (and was without it for a week or so), I had a wicked relapse and was left with chronic inner-ear problems. Obviously I'm hoping that won't happen this time. The cortisone shot (which was for the inner ear thing) should help, but I'm sure anxious to get my LDN!

I GOT DISABILITY!! (Long...)

2009-01-27T11:09:00.014-06:00

Well, it's official; the U.S. government agrees that I'm a bona fide gimp.

And I am so relieved! I mean, WHEW!! I only got denied (and had to appeal) one time, which is really unusual for someone who never used an attorney. But seriously, when you're really disabled, and by that I mean, obviously, seriously, multiply disabled, there's usually enough undeniable evidence of it, and in my case the Social Security Disability people saw that evidence and agreed relatively quickly in the process that I am indeed truly disabled.

Again, big whew! I really expected to have to appeal at least one more time, so I'm deeply grateful that the system was more humane with me than it sometimes is with applicants. Almost everyone is denied the first time.

Anyway, the thing I'm most looking forward to, now that it's official, is health insurance coverage, specifically Medicare, which automatically comes with disability. I realize from years of frustration working in a doctor's office that Medicare is not great insurance, but it's way better than nothing; I haven't been able to afford any insurance since about two years after I was diagnosed, because the premiums kept doubling every few months until I was spending over $1,000 every month just for coverage, and I wasn't earning enough to do that.

Unfortunately I spent all my savings, went way into debt (even got way behind with the IRS!) before I finally had to drop my coverage and apply for disability. Which was stupid of me but there you are; hey, I never said I wasn't stupid. But I am trying to get it together.

Aha, but regardless of all that verbiage, WAS a really disabled? Really?

OMG,YES, I was for years before I ever contracted MS, due to progressive spinal problems. But I was too stubborn or too deeply in denial or too something to even apply for disability until long after I really couldn't work at anything, anymore, at all.

And that, as it turns out, was a little late, too late really; I should have faced reality and started the process of application for disability way earlier, a couple of years at least.

But I was used to ignoring (or trying to ignore) physical difficulties, plus I was (and am) quite happy in general, so that helped enable me to endure quite a bit. Not being able to sit upright for long enough to accomplish anything was a challenge to which I was also accustomed, but once I couldn't remember anything anymore either from one minute to the next, once I couldn't multi-task at all anymore, once it took me forever to get anything done correctly, I really couldn't work.

Well, I could have tested mattresses I guess, part time, if there was minimal paperwork and no rush...

Anyway, after I'd used up all my savings on insurance, health care, and life, I saw that I had to have help, ASAP. It was humiliating, but evidently it was what I was meant to go through. I was too old and tired to move into my little Honda Civic with my dogs and panhandle for a living.

But the thing is, I have Medicare now! Plus I'll get a small payment every month to (almost) live on; I'll need a housemate or two to split the rent, but at least I don't have to move into the Civic, so it's all good.

Things are looking up. Now to find a doctor who'll take a new patient on Medicare!

So what's my supposed disability exactly?

Well first of all, just having a diagnosis of Multiple Sclerosis does not mean you're necessarily disabled, much less win you official status as such. What matters is what's specifically wrong with you.

My disability is mostly due to a pre-existing spinal condition. If it weren't for that, I could do something. In terms of disability, my physical problems are almost all due to my spinal issues, except for my inner ear and balance problems, which came with the MS. (MS also causes me to have chronic urinary retention, but that wouldn't affect my ability to work.) I sometimes need a wheelchair entirely because of my back, not MS; I needed a wheelchair for years before I got MS. Someday I might also need the wheelchair for the MS. You never know.

My ultra-crappy memory and other cognitive problems did come from MS. (I thought at first they were just from aging, and/or extreme sleep deprivation from pain, but it was MS.)

Applying for Disability- About the Process:

I guess most people know that applying for Social Security Disability isn't easy - for one thing, as of now, the Social Security Disability forms seem endless and are very poorly designed; the questions sometimes double back on themselves and can drive you nuts if you aren't already.

(nuts)

The worst part is that whole process adds insult to injury, and I often felt it was designed to make the applicant give up, which actually worked for awhile in my case- I did give up. But ultimately I had no choice but to start over and hang in there because I really couldn't work. Like I said above, I did finally win disability after only one denial, and without an attorney. It can be done, if you're really disabled, but a further part of the equation in my case was that I was sort of an insider, on the medical side; I'd worked in a doctor's office for many years, so I had the advantage of understanding most of the process a little better than the average applicant. That helped, but it still wasn't easy.

My part of the process

The first thing I did was to look for information on winning disability online, and found relevant forms on many websites of disability advocates and disability attorneys. (Google "applying for disability").

I downloaded what I needed from websites like this one; one form for physical disability and a separate one for mental disability (re: my memory issues). These are very, very long, detailed forms, and the way you state your answers is really important. It takes work, hard work, and for years I just wasn't up to it, which was even more depressing. It wasn't my nature or my fate to be depressed, but I felt pretty hopeless next to a huge, cynical institution like the Social Security Administration.

But ultimately I HAD to face it; I'd been living without any health insurance for too long and my savings were long gone. But even then I had to pace myself, spreading out the process of filling out the initial application over several months. I get dizzy and nauseous if I read too much (due to the chronic inner-ear problems).On top of that, I had a badly injured right wrist at the time that was really quite incapacitated for almost a year, and that made it even harder, what with all the writing. (In fact, that's why this blog wasn't updated for so long!)

I needed help, but I also needed help to get the help. HELP!

The hardest part of the application for me, other than just keeping up with it and keeping it organized, was writing the required summary of my disabilities, sort of a major, very personal 'essay question'. At first tedious, it gradually became a thoroughly depressing project, like looking at yourself medically in a full-length mirror when you're not doing well. I worked really hard on that summary, but after countless days and hours, I still didn't like the way it sounded, so I asked my dear friend John for help.

(Friend John)

John's a non-medical person (actually a minister) but is very smart, incredibly patient, a great listener and a wonderful writer. He did a great job of editing and restating things for me. (Bless his heart, he got WAY too-much-information about me!) But it was wonderful having some help after months of struggling alone; John's editing made the application much more concise and clear, and much less annoying to read I'm sure! Thank you again, John.

The Doctor's Part of the Process

After my part of the application was complete, I took the rest to my doctor. There's a big part for the physician to fill put.

IMPORTANT: You absolutely cannot and should not just send forms to your doctor and expect him/her to take precious time and effort to fill them out; you probably need to make an appointment (it took three different sessions for me!) specifically to get forms filled out.

Your doc's office will still have to provide voluminous records and fill out other, endless forms for you (for which the government provides very inadequate compensation), so be patient. The law allows providers a certain maximum amount of time to respond with requested records and forms, after which they face stiff fines and other bad karma, so they'll do their best. Be ready to assist with dates and other info on your history that's relevant to your application.

Obviously it helps if your doctor knows for sure that you are truly disabled and that you truly cannot possibly hold down a job; I had no problem there because I used to work in my primary care physician's office, and she knew not only my work ethic but saw me struggling harder and harder through the years, taking longer and longer to get less and less done. She kept urging me to apply for disability. Thank you, Dr. Connie.

Being disabled and applying for disability sucks hard enough without having a doctor who doubts you!

Your doc needs to know beyond a shadow of a doubt that you're not faking anything, and must never feel pressured to even slightly exaggerate on your behalf, much less actually fake anything. If you're really disabled but don't have a doctor who knows you as well as mine knows me, and believes you as totally as mine believes me, then I guess I'd advise getting a lawyer, who will represent you and will probably steer you to a sympathetic doctor. And I'm really sorry if that does describe your situation, because like I said, it sucks hard enough to be disabled without feeling defensive or disbelieved. Seriously.

I may add more to this later, but for now, that's my story and I hope it's helpful. If you or a loved one is applying for disability, and if you don't have a lawyer, you might check this link (or almost any other disability lawyer's website) for the appropriate disability form(s), and see what you think...are you disabled? Honestly? Then take my advice and apply sooner rather than later for disability, and good luck.

You Think it's Hard to Get Disability in the U.S.?

2008-08-28T16:15:00.007-05:00

Sadly, but not surprisingly, my application for Social Security Disability benefits was recently denied. And while the process of appealing the ciless denial is both disheartening and a major hassle, I can't really complain when I read stuff like this story from the U.K., upon which I won't even coment...

Exclusive: Martial Arts Champion Hit by Multiple Sclerosis Denied Benefits
Aug 28 2008 By Lachlan Mackinnon

A martial arts champion whose life was "destroyed" by multiple sclerosis has been refused benefits - because she can still talk.

Tae Kwon Do silver medallist Kirsten McLaughlin, 33, requires round-the-clock care from husband Alan, 34.

But she has been denied disability living allowance as the authorities claim she only needs "comfort and assistance" and can still "communicate".

Kirsten, who won her silver medal at the Tae Kwon Do world championships in Sardinia in 2006, now has to be carried up the stairs to the toilet by Alan, who also has to help her dress and undress.

Her life is a far cry from the days when she was competing in contests with gold medal-winning sons Ryan, 13, and Darren, nine, also fellow Tae Kwon Do hotshots.
Kirsten, of Drumchapel, Glasgow, said yesterday: "I have no life. I am trapped in this house constantly.

"I can't believe some government civil servant sitting in an office somewhere has decided I don't deserve these benefits. It is a ridiculous decision. And the reasons they've given to justify themselves are even more ludicrous.

"I have a three-wheel zimmer to help me get around the house and I am in constant pain. I suffer from spasms that feel like electric shocks through me.

"My speech goes when I get tired and my legs go into cramps at night.

"Alan has to rub my legs at least five times during the night.

"My life and my social circle was based around Tae Kwon Do and I've lost everything. It breaks my heart not to be able to take the boys to training.

"Everything is a battle for me. I don't live from day to day, I live from hour to hour because I never know what's round the corner. I've had three relapses in 15 months and can't see things getting much better."

The family are forced to scrape by on s70 a week income support, as well as child tax credits and child benefit. The extra DLA payments of up to s110 a week would ease the burden of paying their mortgage and raising their kids.

But in a letter two weeks ago, the Department for Work and Pensions denied she was eligible for the disability payment. Among the reasons was her ability to "communicate".

They also claimed she didn't need help getting around, making meals, getting up in the morning, going to the toilet, bathing and dressing - all of which Kirsten and Alan flatly deny.

In a previous letter, the department accepted Kirsten needs help to "move about indoors" - despite insisting, in a previous paragraph, she did not require assistance "getting around outdoors" with "appropriate aids".

Earlier this year, it emerged drug addicts and alcoholics claiming the payment had risen five-fold, from 3000 in 1997 to almost 17,000 in 2007.

Claimants with psychosis - a form of mental illness said to be often caused by smoking cannabis - leapt from63,000 to 148,000.

Alan said: "They hand the payment out freely to addicts but won't give it to my wife who has led an active, healthy life.

"Our whole family life was based around Tae Kwon Do but that's all come to a standstill. The kids can't get along to their training as often because it all depends on how Kirsten is feeling.

"In the last year, she has been outside 10 times at the most. She has been imprisoned by MS."

Kirsten was diagnosed with MS eight months ago and wears a cast on her left arm because it keeps going into agonising spasms.

And she had to close down her printing firm six months ago because she couldn't cope.

Alan said: "Losing her business made her feel completely depressed. She built it up over eight years but her world collapsed."

He revealed the benefits battle had drained Kirsten even further, adding: "It is a complete slap in the face. Kirsten's condition has gone downhill in the last year or so.

"She is in constant pain and is always fatigued to the point where she virtually passes out. We've been told her condition will steadily deteriorate.

"Having the disability living allowance would make a real difference because it would mean we could adapt the home by fitting things like a stairlift.

"I can't work because I'm looking after Kirsten and we've had to rely on her dad to bail us out with the mortgage for the last few months."

Alan added: "With the advances in stem cell research, there is some suggestion there could be a cure within the next five years, which gives us hope."

Scotland has one of the highest rates of MS in the world. More than 10,000 Scots have the disease, which causes the body's immune system to attack and destroy nerves. Symptoms can range from pins and needles to paralysis.

A Department for Work and Pensions spokeswoman said: "Claims are assessed taking into account information provided by customers and on the basis of expert medical advice.

"If a customer is unhappy with the decision made, they can ask for it to be reviewed and, if necessary, appeal to a tribunal.

"Unfortunately, we are unable to talk about individual cases."

I found the story here-

http://www.dailyrecord.co.uk/news/scottish-news/2008/08/28/no-way-to-treat-a-hero-86908-20714087/

We're Supposed to Call Them "Challenges"...

2008-07-08T11:41:00.011-05:00

I haven't updated this for many months, so there are some issues...

First of all, after a couple of years of chronic, asymptomatic bladder infections that I assumed were due to not drinking enough liquid, I realized that I have urinary retention, a common problem with M.S. patients, caused by a bladder that basically fights against emptying, called neurogenic bladder.

When the bladder keeps a pool of urine inside all the time, infection is inevitable, especially in women, no matter how fastidious one's bathroom hygiene....

And yes, of course I tried cranberry juice; I drank nothing but cranberry juice, at least 1/2 gallon a day, along with many, many cranberry tablets daily, for months on end, literally. It didn't make any difference at all, except that I gained weight from all the juice. Before I got MS, cranberry juice was all I needed for my then rare bouts of cystitis. Presumably my bladder was emptying normally then.

Anyway, it turns out I needed to mechanically empty my bladder by self-catheterizing, frequently emptying the residual urine out with a little tube. As a (retired) midwife as well as a female, the procedure was easy even the first time, but it still wasn't enough to keep infection away for long. So I had to resort to daily preventive antibiotics, specifically Augmentin, which has been working fine, but is a little hard on my stomach.

I hope to switch to d-Mannose, a healthier alternative to antibiotics in treating urinary tract infections (UTI's). But before I can do that, I need to get some labs done to see how I'm doing, and that'll have to wait, because like more and more people, I'm flat broke, cupboard bare, up to my eyebrows in debt, etc. I truly can't work and have no health insurance, so I can't afford to get labs or any other tests done for now unless it's a life-and-death emergency. (I do have some income, but it goes to pay back taxes, which means that I don't qualify for any medical programs.)

But on the up side, last month I finally finished my application for disability (WHEW!), and have reason to hope that I'll eventually be approved, which will get me Medicare, so I can finally see a urologist, among other things.

Anyway, the self-cath routine was no problem at all until something else happened.... a stupid accident that is rooted in my total inability to multitask, another common M.S. symptom.

You're not going to believe this, but I got hurt trying to do an isometric exercise. Seriously. (Talk about lame...)

To ease mild bilateral tendinitis in my arms, my doctor suggested an exercise in which you hold your hands together and try to twist one hand while resisting with the other one. Well, I did the twisting part really well, but I must have forgotten to resist, because something went pop and I knew I'd messed up my right wrist. Doh!

This was over 3 months ago, and after zero improvement (despite wearing a brace and taking my usual anti-inflammatories), I finally had an MRI done a few weeks ago (another reason I'm broke). Diagnosis: torn tendons, a lump on the bone, etc. Of course I'm supposed to see a hand surgeon, yet another thing that'll have to wait.

Meanwhile, I still wear the wrist brace all the time. When I take it off (like to wash my hands, or to wash it), I really have to remember to hold my wrist very, very still. If I forget and try to flex it, which sometimes happens because I space out easily, there's this very painful "popping" sensation, accompanied by intense burning that lasts and lasts. Not fun at all, and not conducive to healing.

So to get back to the initial subject, I can't self-cath until this wrist thing heals or is surgically repaired because self-catheterizing requires acutely flexing both wrists. Like I said, I'm on antibiotics anyway so hopefully that'll cover me.

Actually, the only thing I'm really worried about is that I've been out of LDN for a couple of days so far. Yikes!

Even though it's very cheap (about $1 a day), I was too broke to reorder it until this morning. I borrowed some money from some friends yesterday evening, (thank you Johnny and Sara!), so hopefully my refill will arrive soon. I get my LDN from The Compounder Pharmacy in Aurora, Illinois ; they're one of the few compounding pharmacies that has many years of experience successfully compounding LDN, and in my experience they're always dependable, prompt, and reasonably-priced.

The thing is, the only other time I ran out of LDN, about 3 years ago, I developed a horrific relapse, which left me with chronic labyrinthitis, for which I see an oto-neurologist and still have to take Phenergan daily. The nausea from the labyrinthitis somehow led me to drink a lot less liquid, which didn't help my bladder problems...

Obviously I'm hoping that nothing dramatic will happen this time; LDN can't help balance my immune system if I can't take it...
Oh, and it's July in Texas, which should speak for itself.

M.S. patients are almost all heat-intolerant. For many of us, that means no hot bubble baths, no getting into hot cars, no lounging in a hot tub, certainly no saunas, ....I pretty much hibernate in the air conditioning for almost 6 months out of the year. I take a bottle of iced water and sometimes ice packs when I go out.

By the way, they used to do a "hot bath test" to diagnose MS.

So exactly how does too much heat affect the typical MS patient?

For most of us, we can count on increased symptoms, temporarily, such as: profound fatigue and weakness, numbness in the extremities, decreased cognitive function, slurred speech, blurred vision (known as Uhthoff’s sign), and/or tremor.

I have a friend who's had MS for decades, and although she doesn't drink alcohol, she's been presumed to be intoxicated in public several times because she simply got too hot. It's easy to see how it can happen- she was staggering, her speech was slurred, and she couldn't even write legibly, so she was treated like a drunk. The police were called on at least three different occasions that I know of, before she finally got a Medic-Alert bracelet.

Personally, I carry an M.S. I.D. card, officially identifying me as an MS patient, and describing possible symptoms; on the back of the card, it says, "The person named on this card has Multiple Sclerosis and may have any or all of the following symptoms:
•Loss of balance or coordination
•Difficulty walking or writing
•Numbness or partial paralysis
•Double or blurred vision
• Slurred speech
•Extreme fatigue

Meanwhile, I have dreams about living in a snowy place... it was 105F here yesterday.

But l am unceasingly grateful for air conditioning and the electricity to run it, for clean cold water to drink and crushed ice to munch, and especially for my supportive friends and family who won't even let me get into a hot car.

Things are actually a lot better for me, lifestyle-wise, than when I was diagnosed with MS in 2003. I was living alone out in the country with no A/C (not even in the truck), and no running water at all. Barton Springs, Austin's famous spring-fed pool, was a Godsend for me then; I'd swim my slow laps in the icy water and it'd keep me cool for hours afterward.

Blessed Barton Springs, a brisk 68F year-round.
Because of my deteriorating spine, I can't make the walk down to the Springs anymore, but maybe when my wrist heals (and I win the Lotto), I can get a little wheelchair and roll myself down to the pool...

Wow, I really didn't mean to complain so much, but, you know, shit happens.

*If you're interested in d-Mannose, it's a naturally-occurring simple sugar that appears to be a safe, practical alternative for the treatment of urinary tract infections (UTI’s). It's is absorbed eight times slower than glucose, and when ingested, is not converted to glycogen or stored in the liver, but rather goes directly to the blood stream from the upper GI tract. So d-Mannose is mostly filtered through the kidneys and routed to the bladder.

The bladder lining is comprised of polysaccharide molecules. Finger-like projections on the cell surface of E. coli bacteria adhere to these molecules, initiating an infection. In the presence of d-Mannose, E. coli attaches to the d-Mannose molecules instead, coating the bacteria which forms a complex which is expelled when you pee. So basically d-Mannose removes bad bacteria by encapsulating it.

What I'm Learning

2007-10-07T13:35:00.001-05:00

Chapter ONE: Regarding MULTI-TASKING

Background: I was working in a busy family physician's office for years before I developed MS, and had already noticed some relatively mild cognitive problems before I was diagnosed, and I'd attributed the difficulties to chronic, severe sleep deprivation secondary to spinal pain, as well as ageing (I was 53).

In terms of my work itself, since I was salaried it didn't really matter to anyone if it took me longer (and longer) to get it all done, and I loved my job; I was the medical coder, in charge of medical records, prescription refill requests, writing most of letters for the doc, often answering the phone, explaining things to staff members & patients, etc. I was also responsible for keeping the doc as well-informed as possible by researching, screening & printing relevant daily medical news, and I still do that for her asof October, 2007. Jugglers at "Eeyore's Birthday Party" in Pease Park, 2002
What ultimately made it impossible for me to stay in my job was my increasing inability to "multi-task"; I used to have about 12 things in the air at once, juggling them almost flawlessly, but with MS I found I just couldn't manage it the same way anymore. I don't know if my IQ went down, but I think it got narrower, if you can imagine that...

It's weird; I used to thrive on all that frantic activity & responsibility, but after MS changed my ability to multitask, I had to "retire" early.

While I was (and am still) able to complete any one task well (as long as there are no interruptions), multi-tasking used to be my strong point, and now it's history. And, unfortunately, in my former job, multi-tasking was essential, and it's harder when you get interrupted dozens of times every single day as I did; each interruption usually necessitated my starting over (and over and over!) at whatever I was working on when I got interrupted, which was of course very frustrating and time-consuming; I even tried working at night and on weekends when the office is quiet, but for various reasons that didn't work either. (Plus the office was WAY too warm for me, ice packs and all...)

Anyway, I've learned a few things in the last 4 years since diagnosis, like

1. Whenever possible, I avoid multi-tasking in the first place, because I know it's unlikely to work out. I try to arrange to do (or to focus on) one thing at a time, do it well, finish it and move on. It may seem less efficient, but for me, it's best.

2. I no longer try to just mentally shut out distractions while I'm struggling with a task that demands focus- I find it better to eliminate the distractions; basically that just means I turn off the (background) TV or music if it's distracting me and making things harder- when I'm trying to focus on something, silence is my new friend.

3. My cell phone is ever-present and always charged, and I've recently made friends with the alarm clock/reminder feature; I set reminder timers for myself all the time now, because when I get engrossed in something, I lose all track of time, and with the alarm set, I can relax. I found that just leaving myself little notes didn't help much, because I usually forgot to look at them. But I do keep a schedule on my computer and I refer to that every day unless I'm stuck in bed, which is rare and always due to spinal problems unrelated to MS. I don't try to hold too much in my head, because the effort is distracting, and distraction is best avoided.

4. Speaking of the cellphone, I've found that, since I got MS, talking on the phone is an annoyance; I can pay attention to people much more effectively when they're present. Actually, I haven't really been that comfortable yakking on the phone in the first place, but it's worse now. I think it's because I can't do anything else at the same time, and I get impatient, vaguely distracted by my urge to get the call over with, no matter who it is. And I never talk on the phone if I'm trying to do anything else (especially drive!)...it just doesn't work out. And I've flat out told most of my friends & family that talking on the phone is difficult, often even irritating for me, that it's nothing personal, but that I appreciate calls kept brief, prefer email or, better, seeing folks in person.

5. I keep my mind challenged in various ways by researching or studying things that interest me. Like one day for no particular reason I decided to memorize the Greek alphabet, and to recite it every day until I could literally rattle it off backwards. It may seem silly, but I devise these little tests and tasks for myself so that I won't be the last to notice that I'm losing more of my marbles and that they're rolling under the refrigerator...I channel a lot of this BS into my blogs....

6. The cooler it is, the smarter I am; I can't even think straight if I'm too hot.

FAQ's on LDN* (Low Dose Naltrexone)

2007-07-08T15:26:00.001-05:00

What is Naltrexone?
Naltrexone is short for Naltrexone Hydrochloride (C20H23NO4-HCl), an opiate-antagonist prescribed for opiate drug addiction; it blocks the response to opiate drugs such as heroin or morphine. Doses for this usage are 50-150 mg.

So where did Low Dose Naltrexone (LDN) come from?
The idea of using Naltrexone at a much lower dosage for treating immune disorders such as MS is credited to Dr. Bernard Bihari, a practicing neurologist in New York, who began prescribing LDN for his MS patients in 1985.

How does Low Dose Naltrexone work?
LDN works by briefly* obstructing the effects of brain endorphins (the brain's natural painkillers). This has an effect of stimulating the increased production of these same endorphins, which re-balances the immune system, thus reducing the activity of the MS. This blocking effect lasts around 3 or 4 hours.

But how can this work? Isn’t MS is caused by an overactive immune system?
Although there is a long-held theory that MS might be caused by an overactive immune system, it has never been proven. Recent clinical studies indicate that this theory might not be true at all. The October 2004 issue of The Archives of Neurology reports a clinical study by researchers who found that intravenous immunoglobulin therapy applied after the first signs of MS significantly reduced the probability of developing clinically definitemultiple sclerosis. Patients receiving this immune-system boosting therapy also suffered fewer brain lesions.

What MS symptoms does LDN help?
Primarily neuromuscular spasm and fatigue, although patients have also reported improvements of numerous other symptoms. In addition, patients who are in the middle of an acute relapse when they start LDN have generally shown rapid resolution of the attack.

How fast does it work?
Around two-thirds of MS patients have some symptomatic improvement within the first few days.

What dosage and frequency should be prescribed?
The usual adult dosage of LDN for the treatment of MS is 4.5mg taken once daily at bedtime. Because of the rhythms of the body's hormone production, LDN is best taken between 9pm and 3am. The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness.It is generally recommended that the patient begin on 4.5mg per day, and adjust the dosage if necessary. Prescribing 1.5mg capsules allows easy adjustment of dosage. (For example, the patient can take either 2 capsules for 3mg, or 3 capsules for a 4.5mg dose.)

How is LDN prepared?
LDN is prepared by a compounding pharmacy, who will make capsules by either grinding up 50mg tablets of Naltrexone, or using Naltrexone powder purchased from a primary manufacturer. The most popular source of Naltrexone is the 50mg "ReVia" Naltrexone tablet (DuPont), usually prescribed for treatment of drug and alcohol addictions. Naltrexone may also be taken as a solution (in distilled water) with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is used in a liquid form, it is important to keep it refrigerated.
IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.

Are there any side effects?
All sources indicate that LDN has virtually no side effects. Occasionally, during the first week of use, patients may complain of difficulty sleeping. (Reports indicate that sleep disturbance is rare, occurring in less than 2% of users.) If this persists after the first week, dosage can be reduced from 4.5mg to 3mg. Full-dose Naltrexone (50mg 3x day) carries a cautionary warning for patients with liver disease. (This warning was placed because adverse liver effects were noted in early experiments involving 300mg daily.) The 50mg dose does not apparently produce impairment of liver function nor, of course, does the much smaller 3mg - 4.5mg dose. LDN, in the low doses used for MS therapy, is virtually non-toxic, simple to administer, and, compared with other MS drug therapy, very inexpensive.

What about cautionary warnings?
Because LDN blocks opioid receptors throughout the body for three or four hours, people using narcotic medication such as Ultram, morphine, Percocet, Tramadol, Duragesic patch or codeine should not take LDN until such medicine is completely out of the system. Steroids would counteract the effects of LDN, and so should not be combined. LDN should probably not be taken during pregnancy. LDN cannot be used by people already receiving beta interferon; because LDN stimulates the immune system and beta interferon suppresses it, the two therapies are incompatible.

What does it feel like to be on LDN?
At both high and low dosages, patients taking Naltrexone usually say they are largely unaware of being on medication. Naltrexone usually has no psychological effects and patients (at both high and low dosages) don't feel either "high" or "down" while they are on naltrexone. It is not addicting.

Why isn’t LDN routinely prescribed for MS?
Many physicians simply have not yet learned about the positive effects of LDN on MS symptoms. Others may be hesitant to prescribe LDN because it hasn’t yet been approved as an MS treatment by the FDA.

Why hasn’t LDN been approved by the FDA?
Although Naltrexone (in the higher 50mg dosage) was approved by the FDA in 1984, Low Dose Naltrexone (in the 3mg or 4.5mg dosage) has not yet been submitted for FDA approval. LDN cannot be officially approved by the FDA as an MS therapy until it undergoes specific clinical trials required by the FDA.

Why hasn’t LDN gone through a clinical trial as an MS therapy?
Clinical trials are usually initiated and funded by pharmaceutical companies, and these companies are not interested in promoting or marketing LDN.

Why aren’t pharmaceutical companies interested in exploring the possibility of LDN as an MS therapy?
Naltrexone was developed so long ago, no one holds a patent, so generic versions of the drug can be created and sold very inexpensively. LDN can't make anyone any money, so pharmaceutical companies are not willing to fund a clinical trial for a drug that will make them so little profit. Also, if LDN were certified by the FDA and became a preferred treatment for MS, the pharmaceutical companies who make the expensive ABCR (aka "crabs")drugs could lose million$ of dollar$. (In other words, it'$ all about the money.)

Are any clinical trials of LDN scheduled?
Responding to the rapidly-growing, patient-driven publicity about the success of LDN, the MS center at University of Texas recently announced plans for a full clinical trial of LDN as an MS therapy.

Are there any other plans to underwrite a clinical study of LDN and MS?
In August 2004, the LDN Research Trust was created in the UK. Conceived by a group of MS patients who have been helped by LDN, the Trust’s mission is to raise funds for the initiation of clinical trials for LDN. Their website, http://www.ldnresearchtrust.org/, encourages contributions and participation. In conjunction with the Trust, Dr Alasdair Coles, a neurologist and MS specialist from Cambridge University, and Dr Robert Lawrence of Wales, himself an MS patient, are currently working on a proposal for a clinical trial of LDN for the treatment of MS.

Has LDN been reported in any of the major medical journals?
Medical journals are not usually interested in reviewing any drug therapy that has not yet had a major clinical trial. However, the peer-reviewed medical journal Medical Hypothesis recently accepted an LDN/MS hypothesis for publication; it will be published in the next few months.

Can a doctor legally prescribe LDN?
Of course. While it is illegal for a pharmaceutical company to market or promote a drug for a use other than that approved by the FDA, it is NOT illegal for a physician to prescribe an FDA-approved drug for a non-FDA-approved use. (Neurontin, for example, was approved by the FDA in 1993 for the treatment of epilepsy; yet it is routinely prescribed for the "off-label" treatment of MS symptoms.) All physicians understand that the responsible off-label use of an already FDA-approved medication such as Naltrexone is perfectly ethical and legal.

How many MS patients are taking LDN for Multiple Sclerosis?
No one is sure of the exact number, but it is known that thousands of MS patients worldwide are now using LDN, and this number is growing. Without the financial support of the pharmaceutical industry, the reputation of LDN has been driven solely by the patients themselves.

Are MS patients getting positive results from LDN?
A review of the anecdotal evidence indicates that most MS patients taking LDN have experienced considerable improvement, often within days or weeks of beginning the treatment.

How can I obtain LDN and what will it cost?
Answer: LDN can be prescribed by your doctor, and prepared by a compounding pharmacy. Naltrexone is a prescription drug, so your physician would have to give you a prescription after deciding that LDN appears appropriate for you.Naltrexone in the large 50mg size, originally manufactured by DuPont under the brand name “ReVia”, is now sold by Mallinckrodt as “Depade” and by Barr Laboratories under the generic name “naltrexone”. LDN is now being made available by hundreds of local pharmacies, as well as by some mail-order pharmacies, around the US. Some pharmacists have been grinding up the 50mg tablets of naltrexone to prepare the 4.5mg capsules of LDN; others use naltrexone, purchased as a powder, from a primary manufacturer.One of the first pharmacies to do so was Irmat Pharmacy in Manhattan. Their recent price for a one-month's supply of 4.5mg LDN (30 capsules) was $38. Irmat will ship it anywhere, in the US or to other countries, and will accept prescriptions from any licensed physician.

Pharmacies that are good sources of LDN:
Irmat Pharmacy, New York, NY (212) 685-0500
The Compounder Pharmacy, Aurora, IL (800) 679-4667
The Medicine Shoppe, Canandaigua, NY (800) 396-9970
Skip's Pharmacy, Boca Raton, FL (800) 553-7429
Smith's Pharmacy, Toronto, Canada (800) 361-6624

IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.Reports have been received from patients that some pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Also, make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers. The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem.

LONG STORY- My MS History

2007-06-27T09:46:00.001-05:00

(First, please read about "LDN" before you delve into this mess: my personal MS history isn't that interesting, really.)

FIRST HINT THAT SOMETHING WAS WRONG:

Well, it was a year-and-a-half before diagnosis or even any thought of MS.

It started on Thursday, February 28, 2002, mid-morning; I was 52 at the time, and was undergoing routine physical therapy for a long-term lumbar injury, when I began to feel kinda weird; a little weak, a little dizzy, and a little bit "out-of-it" in general.

It was nothing profound at first, not scary or anything, just a new, weirdly unpleasant thing happening on top of all the chronic back and sciatic pain I was used to; something was definitely "off". I knew that the therapy session couldn't possibly have caused "whatever-it-was", because the therapy was very gentle, non-strenuous, and totally routine (for me), nothing but careful stretching, gentle resistance exercises, and lots of passive modalities like hot packs, a T.E.N.S. unit, and massage.

Anyway, I mentioned feeling "weird" to my PT so our session was cut short and I was sent back to work, which was best in this case because my boss is also my personal physician.

Whatever-it-was, I seriously doubted that I was even getting sick, per se, at least, not with anything contagious, because even though I'd been working in a busy family practice medical office (where patients managed to sneeze and cough on all of us constantly), I was famous around the office for being the only staff member who never got sick. (I did have a chronically very bad back and occasional migraines, and slept very little due to pain from the spinal problems, but that was it.)

I didn't feel like I was getting any fever either, so I assumed that whatever-was-happening to me that morning must be some combination of low blood sugar and the onset of a really atypical migraine. I assumed I'd feel better after eating something, so I went to a nearby, favorite restaurant, "Ruby's BBQ", just off the Drag on 29th Street here in Austin.

http://rubysbbq.com/ I love Ruby's and eat there all the time, but on this particular day, nothing tasted right to me. My companion said his food was perfect as always, but for me, everything, even my lemonade, tasted weird. I knew it was me, not the food, and that something was going on; I just couldn't eat, but I still wasn't worried, yet.

Turned out things were just getting started.

After eating almost no lunch I headed back to work, but on the way I stopped off to briefly check my email. And as I was sitting there quietly at the computer, I suddenly began to feel much, much worse, as if I was about to pass out. (Having never actually fainted, I was just guessing, but something was happening!), so I made my way to a couch and collapsed, barely conscious at first.

I felt a little better as soon as I lay down, but as I looked up at the ceiling I realized that my vision was weirdly distorted, as if I was looking at everything through a diagonal grid.
Weird! As I lay there and took stock of myself, making sure I could move everything, I noticed a slight buzzing, semi-numb feeling on the left side of my mouth, as if my lips weren't quite touching on that side, but they were, they just didn't feel each other. Actually, I realized that the whole left side of my face was feeling kinda numb, as if Novocaine was wearing off.

That was probably the first "attack", but it went away quickly. My doc strongly urged me to get a head CT, but I was uninsured at the time and really couldn't. But regardless, "whatever-it-was" was quickly gone and pretty much forgotten.

The thing is, the numbness in the left side of my face didn't go away. And it really should have, unless I'd had a mild stroke or something.

About a year or so later (by which time I had health insurance), I realized that I was having some troubling new cognitive symptoms (yikes!!), which particularly worried me because it was at the same time when my dear Aunt Tootsie was in the later stages of Alzheimer’s. I was so overworked and sleep-deprived that it took weeks for me to notice that I'd been having (and automatically compensating for) problems. But thinking back on it I realized that I'd been either locking my keys in my truck or leaving the headlights on, or losing track of my cell phone or my glasses or whatever on a more and more frequent basis; basically I was (screwing up) at something significant at least once a week, and that just wasn't like me.

Also I'd also noticed that if I got interrupted during a task, especially at work, like sorting and copying medical records, my train of thought would completely derail
and I'd have to start over; I couldn't multi-task the way I used to, which is a disaster in my super-multi-tasking, salaried job.

But it wasn’t until I had to look up a common diagnosis code* that I knew by heart and had used many times a day for years that I realized that something was really wrong with me, that I was seriously losing it! (*BTW, that forgotten diagnosis code was "272.0 for hypercholesterolemia”. I knew it had a "2", a "7", and a "0", but I couldn't remember what order they were supposed to be in or where the decimal went. ) That was that exact moment when I knew I needed a brain scan, asked for one and I got it done the next day, Saturday, February 15 2003.

Obviously I hoped and expected that they'd find that there was nothing serious or progressive unfolding in my brain at all, ruling out any brain tumor or Alzheimer’s. I didn’t really expect any abnormal findings except maybe a sign of a tiny stroke from the previous year's hypertensive episode.

But the MRI report showed no stroke. Just some tiny ”changes”, possibly suggestive of migraine, possibly vasculitis, and most remotely, early MS. The radiologist's report suggested that I have tests to rule out MS and vasculitis.

Well, there’s no way I have MS, (I thought, and so did my doctor), so I didn’t sweat it at all. I'd had thousands of horrible migraines in my life, so that must be it.

But why was my face still numb?

I was sent with my MRI films to the (first) neurologist, and she didn't really think it looked like MS, but upon doing the usual neurological workup on me, we both learned to my surprise that my facial, left-sided partial-numbness actually extended to the whole left side of my body, not just my face. Somehow I hadn't noticed it. And upon questioning me, we both realized that my sleeping a maximum of about 3 hours a night could totally account for any cognitive difficulties. (Duh... I was too sleep-deprived to realize I was sleep-deprived!)

She ordered the necessary bloodwork to rule out vasculitis, as well as an LP (spinal tap) to check for MS. But it turned out that she wasn't really on my insurance plan after all, so I would have to start over with another neurologist, which would take months. I had the bloodtests which did rule out vasculitis, but I'd pretty much decided to at least temporarily blow the whole LP thing off, or at least to put it on hold, solidly confident that I couldn't possibly have MS anyway and that the MRI results were surely from migraine and the cognitive problems due to extreme lack of sleep.

Months later, because the hearing in my left ear was suddenly fading away, I changed my mind and decided to go to see a new neuro after all (one who was really on my insurance plan), to have things checked out. The soonest he could see me was several months away, in July of '03. When the time came, the nice new neurologist looked at the films carefully and really didn't think it looked like MS either, but he ordered an LP anyway, to be done in a few weeks. Then he left town for a vacation. I had the LP done in August.

THE DIAGNOSIS
On Thursday, August 21st, 2003, the labs from the LP came back, and I was absolutely stunned, and so were my doctors~I definitely had MS! I wasn't upset, just amazed and incredulous. I immediately started reading everything I could get my hands on about MS and the various treatments.

Treatments I've Taken for MS
Like I said, when I was first diagnosed with MS (in August of '03), I was stunned, really stunned. I'd never suspected for a moment that I had it, nor did my doctor, and I'd almost cancelled the (supposedly pointless, totally unnecessary) LP because they couldn't tell me how much my part of the bill was going to be*.

But I went ahead with it, and I'm glad I did. (*Turns out it cost me about $200.00.)

Anyway, the LP and MRI were positive for MS, so like most newly-diagnosed MS patients, I wanted to know everything I could learn about MS and every conceivable MS treatment. I immersed myself in it; it was pretty much all-MS, all the time, for months, constantly seeking information and always willing to share it. Learning about MS, for me, was and is a serious, ongoing project that consumed a lot of my time and some real effort, but it was worth it.

Meanwhile, in October of 2003 I was started on my first MS treatment, "Avonex" (a beta interferon 1-a, given as a weekly intramuscular injection). It cost $800 per month, which made it the cheapest conventional medication for MS.

While I had no problems with the injection part, I went through some horrific experiences with side effects.

Usually the patient on interferon has flu-like symptoms for about a day, but I never experienced that. What I did experience was a weird, over-the-top emotional meltdown exactly once a week, 3 days after the shot.

Typically I'd be just fine, dealing with some routinely frustrating situation at work when all of a sudden, out of the blue, the routine frustration I was feeling would rapidly escalate into an unbearable rage. All of a sudden I'd become wildly suicidal, needing that unbearable rage to go away.

And the weirdest thing is, I wasn't even depressed! Avonex took me from zero-to-suicidal in seconds, and made me really desperate to end it all immediately. It was irrational, almost uncontrollable, and terrifying. I never thought anything could make me feel like that; it was a very humbling experience to be so utterly lost.

And it got worse every week! After the last dose, as I found myself deliberately speeding my pickup truck toward a gigantic pillar under Hwy 290 in South Austin, I was Graced with a moment of clarity (thank you, thank you!) and realized, "No! I don't have to do this (crash my truck)- I just need to get off the f-ing interferon!"

I knew that suicide was the only life-threatening side effect of interferon therapy, but knowing what was causing the crazy symptoms didn't make it tolerable - I don't think I've ever been in such mortal danger in my life as I was taking interferon!

So of course I discontinued it, went back to my friendly neurologist and told him what had happened.

He was very sympathetic and said that all that drama I'd experienced was "a well-known reaction some people have to interferon", and that I must never risk taking it again, which was fine with me.

So he wrote a letter to that effect to my insurance company and they subsequently approved my next treatment, "Copaxone", which is glaterimer acetate, a non-interferon, daily sub-Q injection for MS. It cost $300 per week.

Well, at least Copaxone didn't mess with my head, which was a relief. But it sure messed up my body!

My local injection-site reactions were so extreme and long-lasting that after 6 months of daily injections, I literally had zero injection sites left. I was actually about to try to find an injection site on my face when I just gave up and discontinued the Copaxone altogether.

So I was "going bare", completely untreated, and not surprisingly, I felt much better; in fact, everywhere I went, friends and coworkers would tell me over and over how much better I looked.

Then I found a website called "This is MS Unbiased", which was where I first learned about LDN. http://www.thisisms.com/forum-10.html . I'll never be able to thank them enough for that.

I read everything there was about LDN, and decided it couldn't possibly hurt to try it, so I started campaigning to get my family doctor to prescribe it for me. I compiled a lot of information for her, and eventually she agreed to prescribe it.

So I started on LDN on February 10th, 2004, one 3 mg capsule at bedtime, and within 4 weeks, it had undeniably "kicked in"!

I was feeling spectacular, and still am! Except for heat intolerance, which persists and is inescapable in Texas, I feel like I never even had MS.

After a month on LDN, I had more energy than I've had in years, a significant return of abilities, and even an element of euphoria! (Nobody told me about that.)

Maybe the euphoria part was just the mountain laurel blooming, the perfect Spring weather in Austin after a rainy Winter, and the fact that I was finally able to get out and enjoy it for a change.

Specifically, I could walk much better and way further, which opens a lot of happy possibilities again.

I noticed that I could climb my extra-steep front steps like a regular person. See, there are only three steps, but they're unusually steep, and until LDN, I always had to hold onto the railing really carefully with both hands, using my forearms too, if you know what I mean, to hoist myself up one step at a time. And since my left side is weaker and semi-numb, I've always had to step up to the next step with the right foot each time, then I'd barely be able to bring the left foot up to meet it, then up with the right foot again, and then drag the left up to meet it, etc.

I guess from my neighbors' viewpoints, I was at my pathetic worst when I was struggling up those steps.

But after a few weeks on LDN, I found I could automatically walk right up those steps, 1-2-3, like a regular person; just like I would have done before MS.

And getting up from bed or a chair is now effortless and painless.

And I no longer have muscle spasms!

The best part is that I'm sleeping well, and for several hours at a time, which I couldn't do before LDN because of constant back pain and a busy bladder. I hadn't realized that LDN could help other pain, unrelated to MS. But I've been much more comfortable in what must be a sea of endorphins. It used to take an epidural cortisone injection to make me feel like this.

And my bladder isn't getting me up two or three times a night anymore either; just once, which is a huge and welcome change for me.

In other words, I've been feeling NORMAL. Remember NORMAL? I didn't, not really. I certainly never expected to experience it again.

When I started on LDN, I did expect that LDN would probably work and work well for me, but I'd also assumed that it'd take a really long time to do anything noticeable. (I don't know why I assumed that, but I was totally prepared to be a very very patient patient!)

And all I'd dared to hope was that LDN would keep me from getting any new symptoms; it never occurred to me that I'd get better. But LDN made me feel at least 10 years younger!

I now take 4.5 mg of LDN at bedtime, which seems to be the optimum dose, and I get my LDN from "The Compounder Pharmacy" in Aurora, Illinois. http://www.thecompounder.com/msnaltrexone.php.

It comes as a small capsule, and costs about $1.00 a day including shipping. I've had zero side effects, except for the good ones! My doctor is impressed, and I'm really grateful.

Well, that's my story so far. Check the "links" list for more information.

Reality Bites

2006-11-07T09:45:00.000-06:00

RRMS Prognosis~
(Warning: not-Candy-coated!)

It is a troubling fact that almost all newly diagnosed Relapsing Remitting Multiple Sclerosis (RRMS) patients and their families, upon requesting and expecting an honest assessment of what to realistically expect in the future, are deliberately fed "candy-coated" or downright misleading statistics. Whether the BS comes from a physician or from the NMSS (National Multiple Sclerosis Society), as a true believer in accurate thinking and complete information, getting manipulated when I've asked for the truth really bothers me!

This widespread withholding of the more discouraging statistics re: the likely long-term prognosis for the average MS patient is no doubt done with good intentions; it's simply an attempt to avoid "unduly upsetting" the newly-diagnosed and their loved ones. In fact, my own doctor told me that not too long ago, many doctors never even told their MS patients that they had (or might have) MS, because conventional medicine had nothing to offer anyway, so they rationalized lying to the patient by saying that "the stress of learning about the diagnosis could bring on an exacerbation of the illness".

Yeah? Well baloney I say; overwrought baloney.

Knowledge is power! And keeping patients in the dark is at best misguided, and in fact outright insulting, patronizing, eventually pointless, and is a perfect example of an outdated, paternalistic approach to the doctor-patient relationship.

Keeping the patient in the dark will eventually destroy trust as surely as it utterly defies the concept of patient education and "informed consent", not to mention plain truth. Those of us actually living with the disease have to experience whatever exists and lies ahead for us regardless of what we're been told, and I for one find that being lied to is generally much less helpful than actually being fully prepared with accurate information.

Those incomplete or misleading statistics to which I refer typically stop deliberately at 15 years after onset of symptoms; they really don't like to mention what happens after 20 years, because by then statistics are noticeably bleaker.

So if you're sure you're ready...

MS Statistics at 20 years out, Unsweetened

1. 90% of RRMS patients will develop Secondary Progressive MS (SPMS)

2. 80% of MS patients will have at least some degree of bladder dysfunction

3. 80% will have cognitive problems (the ability to multi-task in particular tends to ebb)

4. 70% will have at least some degree of sexual dysfunction

5. 50% will not be able to walk unaided

6. 66% will have at least some degree of pain from MS

7. 40% will never be pain free

8. 33-50% will have at least some degree of dysphagia (difficulty swallowing)

9. 10% will be institutionalized due to severe cognitive dysfunction resembling dementia

10. Up to 15% of MS patients die by suicide*.
*In 1991, the death by suicide rate was found to be 7½ times greater for MS patients than for non-MS patients; recent, larger studies however, indicate the suicide completion rate among MS patients is much higher, closer to 15% overall.