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