MRI results and the road from here

[Nancy T]

Not MS.

After 11 years (of bizarre symptoms, after 12 PREVIOUS years of dizziness),

or 10 years (of wondering if I had MS, after neuro Dr. B. basically said I did),

or 9 years (of hell, after Dr. B. told me I had medical student’s disease),

or 7 years (since my last brain MRI),

it seems that MS is finally out of the picture!

The “impression,” which the neuro e-mailed me, said “stable appearance to the multitude of tiny hyperintense lesions scattered throughout the deep white matter of both cerebral hemispheres. These are small in size and nonspecific in appearance. They do not appear to be involving the corpus callosum. Differential continues to include sequelae of small vessel ischemic disease. Overall, the distribution and number of lesions do not appear changed as compared to the 2003 examination.”

(The early-2000s reports from a different facility had noted disappearance of some lesions and appearance of others, in a pattern consistent with MS though not specific for it; the earlier neuros interpreted this as meaning not MS.)

No matter what technology or technique was involved in the new MRI (and don’t ask, because I don’t know, though the bore hole seemed AWFULLY long!), I think that because nothing SPECIFIC for MS has shown up after ELEVEN years, and because my neuro exam (at least up til my last one in 2009) has remained basically normal, this really cannot be MS, or certainly nothing identifiable as such.

I don’t think I can be blamed for having thought so much about MS, having been essentially told by a (smart) neuro at one point that I had it, having had lots of mimics ruled out, not ever having had spinal tap or VEP, and having had apparent disturbances of the nervous system in multiple places over time, namely:

1. Lhermitte’s--spinal cord
2. Very bad AEPs bilaterally and strange “crossover” events--brainstem?
3. Dizziness with no inner-ear diagnosis, despite investigation by ENT super-specialists
4. A summer of “missing things” when reaching--cerebellum?
5. Widespread, recurring paresthesias in specific spots, including shocks in two distant places at the same time--spinal cord?

And things that may or may not be CNS-related:
1. A major slowdown in walking speed and distance (two miles to two blocks)
2. Increasing fatigue and cognitive problems

(And a few other things but probably unrelated--achy limbs, tender tendons, osteoarthritis, and ghosting after using my eyes fast.)

I didn’t “get” all these symptoms from reading about them; it was the other way around.

I’m (a little) surprised at how easily the MRI news went down with me. Of course I wanted a diagnosis, so I felt a short-lived sense of disappointment But actually, it was the news I pretty much expected; and I soon felt good knowing that I had pretty darn good confirmation that I DON’T have MS. Ruling it out is a BIG step to finding out what IS wrong.

But--of course--what now? When I started this last month (requesting a reorder of the MRI that I'd been offered but hadn’t scheduled 1.5 years ago), prompted in part by a new attack of Lhermitte's, I was determined that at last I would get to the bottom of this, going through as many doctors as necessary. And I still feel that. The neuro (whom I saw once, in mid-2009) kindly agreed to see me for a reassessment, even though he’s an MS specialist. I don’t have a huge amount of confidence in him, but at least it will be a start, and maybe he will turn out to have more stick-with-it-ness than I imagine.

So after 11 years, at age 53, my only diagnoses are sudden unilateral hearing loss; “cranial neuropathy” bilaterally (because of the bad AEP); “benign paresthesias” from one neuro (what the h does that mean? and how little it explains!); possible fibromyalgia (it may be, but I’m certainly not typical for that and it doesn’t explain much except the arm and leg aches), and a postulated “muscle imbalance” related to my scoliosis, which they’ve used to explain my walking problems--although this does not make sense to me and they seem unsure about it themselves.

I honestly, truly don’t know what is wrong with me, but I KNOW that something is. My symptoms and/or test results have so many times seemed to point so clearly to something that was then disproved: acoustic neuroma, perilymph fistula, MS... and despite certain “things that make you go hmmm,” I don’t seem to have myasthenia gravis, nor lupus, nor low B-12, nor sarcoidosis, nor Lyme, nor you name it. I have no idea what to think now.

I have no idea what direction the neuro, or my PCP, or any other doctor, might go. I just know one thing: it’s NOT medical student’s disease or other mental problem (uh, how does that cause Lhermitte’s and abnormal AEPs?), and I am not going to let anyone tell me it is. Those days are over!

So, folks, wish me luck. I wish you all the same. Thanks for all your help and support over the years!

Nancy T.

[Udkas]

Hi there,
I will have to respond in more depth when I get home from my holiday, I can relate to the emotions this " lack of diagnosis brings" of cause you don't want to have MS, but you want an explanation.

Thinking of you, I am  hoping that the neuro was able to explain the reason for your symptoms or an idea or path to follow, okay you don't have MS but you do have "something"  I am with you every symptom I have read about has been after I have experienced them.  Goodluck, don't leave the forum.
Cheers,
Udkas.

[Nancy T]

Hi Sarah. What you say is so true. I will let you know if I find anything out. I think it will be a very long road, IF I ever get any answers.

Apparently I'm only going to be allowed a "return" appointment with this neuro, which probably means only about 15 minutes, I'm guessing, which is hardly enough for a starting-over.

But I have reached a turning point. I am not going to give up again (as I did so many times in the past) until SOMEONE has given my case a serious, unprejudiced, and thorough-enough investigation. That means finding out what's going on in my spinal cord (re the Lhermitte's), if nothing else.

There's something about getting to be an old crone that's made me get STUBBORN. At last I do what I want and don't do what I don't want. Ahhh, it feels good. I like being 53. :)

Thanks for your encouraging comments, & I hope your path becomes easier! :)

Nancy

[Sparkysarah]

I have not been on this forum for long and it sounds like you have been here for a while and so will be missed I am sure. I am sooooo glad for you that it is not MS as this is not a dx that anyone wants, but it is frustrating when you have been experiencing sx for so long and are none the wiser.

I do not know what to suggest and sometimes having fresh eyes see you is the only way forward.  However it sounds as if your current neuro is trying to help even if you do not have much faith in him and I hope that he will find answers.

Let us know (hopefully sooner rather than later) but you get on.

Love Sarah

[Nancy T]

Thanks, Paula and Shell! I promise, if I ever do get a diagnosis (of anything) or learn anything else interesting, I'll let y'all know!

You guys are super. You know that, don't you?

Take good care, and very best wishes to you!

Nancy

[sllowe]

Nancy - you leaving us?  You've been here long enough to know out MOB ways, lol

My eyes are not the greatest today, but promise I read your well stated recap!  Our support is not for just the dx'd, and never forget that.
Hope to see you around.
-Shell

[figuerpa]

Nancy,

Wow you have been on a long road. I hope that the MS specialist gets to the bottom of it for you.

You can't leave us. There is so much you can contribute to everyone here and as I once read on here "once a member always a member"

Take Care,
Paula

[Nancy T]

Thanks, Lulu. :) I'm not very hopeful, but I'll give it the old college try.

You take good care!

Nancy

[Lulu54]

Oh my, Nancy.  You have been through the medical wringer with this.  We definitely know what you meant - you need a name to pin on this and if its not MS, then what is it?  

Med Student Syndrome?  Not likely - that usually disappears when the next disease d'jour is studied.  :-)

I'm sorry you hit this wall again.  Let's hope this MSologist is good and really does stick with you ti find an answer.

be well, Lulu

[Nancy T]

Also I forgot to say bilateral trigeminal-nerve symptoms, the first episode of which (in 1999) could definitely be called neuralgia! (Lightning-bolt, painful shocks.) In a 42-year-old, that's suspect for MS, isn't it? So, docs, don't blame me for having thought I might have it!

[Nancy T]

Whoops, when I said "Of course I wanted a diagnosis," I didn't mean I wanted a diagnosis of MS--just A DIAGNOSIS. Of SOMETHING to explain my symptoms! You all know what I meant.