Luckiest girl in the world

I posted this on Facebook a few days ago, and it appears to be true: I do not have MS!

Folks posted a bunch of questions so I’m writing a longer blog entry to explain some stuff.

Executive Summary
I definitely don’t have MS! I have no idea what’s wrong with me, though! I am following up on other stuff! Details below, if you want ’em.

So you’re all better, then?
Um, no. Sadly, the day after I heard I don’t have MS, when I woke up it was clear that my body did not get the memo. So I’m still calling it My Fake DiseaseTM even though my dear friend Karen gave me a very good argument for why I shouldn’t. Logic and love simply did not trump my adoration of a running joke, and my devotion to branding.

So, how do they know you don’t have it? What happened?
After years and years of hearing that I don’t have MS ‘yet’ or I have ‘probable MS’ or, from one or two docs: ‘I have no idea what’s wrong with you’ with an open-eyed glare that clearly communicated: ‘I think you are going to a series of doctors and using crutches and a wheelchair just to get attention;’ I finally took a break for a year or so from doctors and then went back in — this time to the U of MN.

I cannot recommend the U enough. And my particular doctor, William Schmalsteig, was utterly amazing. Thorough. Took me seriously. Listened very empathetically. Explained things in a through, clear manner that not a single other neurologist felt was necessary, apparently. If you know anyone with neurological issues, send them to Dr. Schmalsteig. Seriously.

I went through a ton of tests — some I’ve had repeatedly in the past and some no one else has bothered to perform: an MRI of my brain and upper spinal column. Evoked potentials. Another spinal tap. Very, very thorough.

And what they found was this: I have the same three lesions on my brain that we discovered in 2007. Because they are in white matter, they seem to be from a demyelinating event or events, which is what led people to suspect I had MS. It was, although he didn’t use the phrase, Clinically Isolated Syndrome. These lesions were there in 2007 (and had probably been there a long time) and they are pretty much still exactly the same now.

Because the lesions were not active when they were initially discovered, the neurologists I saw wanted to wait to be sure I DID develop MS, which I was, according to the article I linked to above, at high risk of developing. This is why they called it ‘probable MS’ and signed me up with the MS Society and started talking like I already had it. Most people who have neurological symptoms and lesions in the places I had them which are somewhat typical for MS develop MS.

Well, it’s been six years and I have not developed any more lesions. My spinal tap was clear of ALL inflammation — even the normal levels of inflammation some folks have who don’t have a demyelinating disease of any kind. My evoked potentials showed normal reactions. My neurological physical exam showed that I was fine neurologically.

I don’t have MS. I just don’t. Since I have lesions on my brain in places that are fairly typical for MS I have a slightly higher chance of developing it than the average person — 10%. But right now? I definitely don’t have it. In my mind, I have a 90% probability of never developing it.

Well, what caused the lesions? Why do you have them?
We don’t know. People have isolated events of demyelinization for all kinds of reasons and non-reasons. Some of them include acute childhood infections or fevers. Might be from something like that.

So what’s wrong with you, then?
Another thing we don’t know, yet. My incredibly wonderful doctor had a few theories — one in particular in regards to my gait which I am not ready to discuss in public at the moment. The fatigue is the part that really matters to me, though, so that part I’m pursuing right now. I will be going to see a rheumatologist and then possibly another immune disorder specialist to pursue some other diagnosis in a month or two after I have a little break from endless poking and prodding.

Have you considered [insert favorite disease/homeopathic treatment here]?
Probably. I’ve been at this for six years. I’m pretty smart and proactive, and have a fairly open mind about alternative medicine. I am a devotee of acupuncture, I use herbal medicines. I’m good. Suggest away (I’ve heard of some wonderful treatments for my PTSD from friends, for instance, that I will pursue, and I’m grateful to them for speaking up), but please don’t be offended if I’ve already considered and rejected what you think might be wrong with me or heal me.

Is this good news? I don’t know how to feel.
Oh my god yes this is good news. I feel like my entire old age (should I be lucky enough to reach it) has opened up in front of me: I am allowing myself to envision dancing, travel, physical labor, and a level of independence that I would not allow myself to imagine before. There is a very good chance that my current level of functioning could remain stable instead of steadily getting worse.This is good, good news.

I don’t have a word or phrase for the things that are wrong with me, yet. It’s okay! It’s much better than definitely knowing I have MS. Truly.

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3 thoughts on “Luckiest girl in the world

  1. Phenomenally fascinating from the outside, not in a voyeuristic way, but in terms of watching how diagnoses are made. I am sure it is phenomenally frustrating from the inside but now you have a new path to follow that may lead to better answers. I have one “fuzzy spot” on my temporal lobe which they THINK is the reason for my seizures but they are quick to say that’;s just a guess. The brain likes to keep its secrets.

  2. Yes– what Kelly said! And glad to hear that “old age has opened up to you.” That is MAJOR. My dad has advanced Parkinson’s and was diagnosed on the early side. Although he was fine for a decade or so, he always knew what would happen . . . and it has. He seems much older than other men his age now that he’s had it (diagnosed) since 1998. There really IS something to celebrate with knowing that things can stay stable. I’m sorry you have been poked and examined for so long though. oy!!

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