insomniaville
the MS stuff
31-may-04
From the Most Examined Brain in Virginia.
Nicole's brain. No, this isn't "actual size," wiseguy.
Because Paul of All About Multiple Sclerosis gave me such a kind recommendation on his terrific site, I thought I should offer some MS-related content here for those of you who followed his link. I haven't really offered any links of my own here because his are so comprehensive.
I put this page up because when I was going through the months of testing to find out whether or not I had MS, I got the most comfort from personal sites. It honestly helped to know that other people had been through all this (or worse) and emerged with their voices and senses of humor intact even if they did end up with an MS diagnosis. Dry "just the facts, ma'am" sites rattling off sterile neurological information didn't do a thing for me.
I'm certainly not an MS "expert" by any means -- I've had things pretty damn easy so far -- and I'm not trying to act like one here. I enjoy hearing from people who've gotten a laugh or two from the page or just found it a useful way to pass a little time. Please feel free to write to me to rant about your own experiences or share something about your treatment or just say "Hi". But please, please don't ask "Hey, I saw on your page that you've had [numbness/vertigo/optic neuritis/heat intolerance] and I've had some of that too -- do you think I might have MS?"
I have no idea if you might have MS, and I really don't feel comfortable trying to answer that. My opinion on your symptoms is worthless. The fact that you've had symptoms like mine doesn't mean you've got MS. The fact that your symptoms aren't quite like mine doesn't mean that you don't. (Sorry.) If you truly think you might have MS, I'd urge you to get to a doctor and schedule a visit with a neurologist ASAP. And as long as I'm being bossy, I'll add that you should be careful about looking up symptoms on the Web in general, because doing so is often a really easy and quick way to scare the living bejesus out of yourself. When I started to develop eye problems, I did frantic Web searches on my symptoms and diagnosed myself variously with a detached retina, glaucoma, macular degeneration, eyestrain, and maybe a brain tumor. Not once did my searches turn up a page about optic neuritis, the real culprit.
With all that out of the way, time for introductions. I'm Nicole, a professional web geek living outside of Washington, DC with my husband Bill and three cats. Hi. Nice to meet you.
The Cliff Notes version of my story (the long version follows): In November 1999, a month after I married Bill and a month before I turned 31, I started experiencing numbness in the fingers and palm of my right hand. Because I spend about 95% of my waking hours banging away on a computer keyboard, I assumed I probably had carpal tunnel syndrome and told myself I'd have a doctor look at the hand "sometime." "Sometime" didn't happen for a while, even though the numbness persisted. (Although I'm a frequent practitioner of the "If I ignore it long enough maybe it'll go away" school of personal health care, I don't really recommend it.)
In February of 2000 I had a spell of vertigo that I and my family doctor passed off to the aftereffects of a lingering head cold. But then I started having peculiar vision problems in my left eye. At first, I lost my ability to see fine detail; the vision in the eye gradually deteriorated to the point where I couldn't read license plates or signs and the sight in the eye was blotchy and washed-out. After several frantic visits to my regular doctor and two opthamologists, I learned I had optic neuritis, an inflammation of the optic nerve that's widely regarded as an early warning sign of MS (although it can and does have other causes).
The optic neuritis cleared up completely after a course of IV steroids followed by oral prednisone. The numbness in my right hand also cleared up much more gradually, but I developed a throbbing headache, a weakened left hand, and similar numbness in my jaw, neck, left shoulder, and left hand in late July. The second round of brain MRIs revealed telltale lesions and my neurologist was satisfied enough to make the official diagnosis of relapsing/remitting MS. In a strange way, I was relieved to finally have the verdict so I could start treatment with the Copaxone, which my neurologist recommended as the best choice for someone in my situation. I'd gotten over most of my initial horror and shock that February when I first learned I might have MS. While the actual diagnosis was also a blow, I'm grateful that I had a few months to get used to the idea.
Where things stand now (April 23, 2004): Three years after I got my official diagnosis, I'm still living fairly symptom-free and doing well enough that my neurologist has told me I can come in for yearly checkups rather than twice-yearly. The numbness in my fingers has all but gone and I continue to be lucky enough to avoid major exacerbations. I had a spate of visual migraines last year (in which I'd get the visual "aura" that sometimes heralds a full-blown migraine but not the excruciating pain, thank God), but they seem to have moved on. My last round of MRIs didn't show any real changes. Needless to say, I have every intention of staying on Copaxone.
A sight that greets me every night. Oh joy. Giving myself shots is not fun but I'm used to it now, and I'll do it for the rest of my life if it keeps the MS at bay.
The Long Version: In July 1999, I started keeping an online journal on this site. I never dreamed when I started it that MS would soon enter my life but the journal turned out to be a pretty good record of my problems (which has been helpful as I've consulted new docto rs), and the entries offer interesting snapshots of my state of mind as I went through all the symptoms and the testing. (Well, they're interesting to me, anyhow. You might prefer the Sims sidebars I slapped up in some of the early entries. A lot of people did. It looks really strange to me now and I don't know why I did that -- serious, depressing entries set off by stupid Sims stuff. But people liked it.) Rather than make you dig through all the archives, I'll point you to the relevant entries. Please, please bear in mind that a. I'm not a doctor and any "facts" or statistics I might happen to mention in an entry are not written in stone. Few things are when it comes to MS, I've found; and b. MS is different for everyone. What happened to me won't be what happens to everyone else. Also, I've taken down most of the journal pages prior to 2001, so the "back" and "next" links on these pages may take you to my 404 Not Found page. Until I get disciplined enough to redo the links and make this one cohesive subsite, you'll be making liberal use of your "Back" button. Finally, if you're offended by profanity, you aren't going to like some of these entries. Sorry, but I think that after everything I went through I'm entitled to an occasional cussing jag. Grab your smelling salts, and dig in.
2/14/2000 -- Vertigo: It ain't just an Alfred Hitchcock movie. I'm not 100% convinced this was related to the MS because it went away when I used ear-cleaning drops, but the timing is certainly suspicious.
2/28/2000 -- I develop optic neuritis, although I didn't know that's what it was when I wrote this. I thought it was probably glaucoma.
3/5/2000 -- I get the optic neuritis diagnosis. You'll see that I was still too cowed to name the "not-so-benign condition" ON is associated with, but now you know. (And I'm still not sorry I declined the opportunity to do the IV steroid treatment in the hospital with Dr. Quack. He sucks. More than three years later, I still haven't changed my opinion on that one and I'd still have done the same thing.)
3/7/2000 -- I mention the MS connection for the first time, although I was still somewhat in denial that the eye problem could be a symptom of any other problems. Just the word "neurologist" was enough to scare the living hell out of me. I'd gone from fearing glaucoma to fearing MS and brain tumors. Glaucoma didn't sound so bad all of a sudden.
3/10/2000 -- I have my first MRI and I meet my first neurologist.
3/14/2000 -- I detail my home IV treatment and prednisone treatment. The MS entries don't resume in earnest until:
4/26/2000 -- I have EMG testing on my arm because of my ongoing problems with the numbness.
4/28/2000 -- I have my first neck MRIs. I complain a lot about them, not knowing what was down the road for me ...
5/1/2000 -- ... a spinal tap. (Note: I did get the job I talk about in this entry, so one good thing happened in 2000.)
5/9/2000 -- The aftermath of the spinal tap. If you're scheduled to have one anytime soon, do yourself a favor and skip this entry. I've heard of people who breeze right through theirs and go back to work the next day, but ... well ... that's not how it went with me.
5/12/2000 -- Some people, upon hearing that you've been having disturbing medical symptoms, feel compelled to share utterly terrifying, worst-case stories with you. They do this because they're idiots. This is what I had to say to them. (Warning: Liberal use of the "f-word" in this one.) At this point, I didn't have any symptoms for a while, and I also started my new job. For a little while, I thought maybe the first half of 2000 had just been some kind of long nightmare, and I simply quit thinking (and writing) about it. The problems didn't start in earnest again until late July.
8/23/2000 -- I finally face up to the fact that I have to go back to the neurologist. I denied it and blew off my new symptoms for almost a month because I wanted so badly for everything to be all right. The day that I took a shower and couldn't feel the water on the left side of my neck, I knew I couldn't keep ignoring what was happening.
8/25/2000 -- For the first time, my neurologist tells me that he thinks I've probably got MS. For some reason, this was a bigger blow to me than the actual diagnosis. (This was also the night that Rich won the first "Survivor." Totally irrelevant and totally meaningless, but it stands out in my memory anyhow.)
8/31/2000 -- Just some silliness about my second round of neck MRIs.
9/14/2000 -- I get the diagnosis. The next two entries, which I've also uploaded (the "next entry" links will actually work for these), deal with the aftermath.
10/14/2000 -- All about starting my Copaxone therapy. Gather 'round the fire, kiddies, and learn about how we old-timers mixed our medicine back in the olden days. If you've just started using Copaxone recently, you know that Teva Marion now distributes pre-filled Copaxone syringes. They are about the coolest invention in the history of the world as far as I'm concerned, because the old process I learned in the beginning was an enormous pain in the ass. Measure this, mix that, stir this, de-bubble that ... feh. I've seen Copaxone users bitching up a storm about the prefilleds on various Web forums, but the new needles are A-OK with me.
10/31/2000 -- I bitch and complain about trying to get an appointment at Johns Hopkins to see the MS specialist.
11/17/2000 -- I bitch and complain about my Copaxone injections. (I'm awfully good at bitching and complaining, in case you hadn't guessed as much by now.) As I said before, god bless the prefilled syringes.
1/15/2001 -- I show off one of my brain MRIs. Yes, I'm weird. This picture was my wallpaper on my work computer for a long time, too.
3/7/2001 -- All about my visit with an MS specialist at Johns Hopkins in Baltimore.
8/9/2001 -- My description of a particularly bad episode of the notorious "post-injection reaction" suffered by some Copaxone users. They are rarely this severe, and I wouldn't let fear of these reactions put you off of using Copaxone if your neurologist thinks it would be the best choice for you.
11/09/2001 -- Babbling about my first round of "anniversary MRIs" to see how the MS was progressing in my brain.
11/14/2001 -- The good news -- no new changes turned up in my MRI s.
7/31/2002 -- I meet my new and current neurologist. I'd be happy to provide information on any of the doctors I've mentioned in these pages if you e-mail me, but for reasons I bring up in this entry, I've edited their names out of the site. It's never been my intention to embarass them or make them uncomfortable. (If I really didn't like them, I'd give them names like "Dr. Quack," the dopey opthamologist mentioned above.)
That's pretty much where the MS-related entries end. For now. You'll notice that the entries about the symptoms and the testing took up much more bandwidth than my post-diagnosis entries. And there's a reason for that (no, not that I went on an extensive journal hiatus): The abstract thoughts of "Ohmigod, I might have MS" were far more upsetting and scary than the day-to-day reality of having it has been for me. I have a numb left hand. I tire easily sometimes. I give myself a shot every night. There are people who don't have MS who have it much worse than I do. In the last couple of years since my diagnosis, I started a new career as a Web designer and my husband and I bought our first house. I can honestly say that my life has progressed pretty much as it would have if MS had never entered the picture.
I'm not naive enough to think it'll always be like this, of course. If there's one thing that bugs me more than the numb fingers and the nightly shots, it's that feeling of waiting for the other shoe to drop. But I'll take the relative peace for as long as it lasts.