This Is MS Multiple Sclerosis Community: Knowledge & Support

I had been reading a lot about MS for about a year before I was recently diagnosed. Had read about the stages as well as other demyelinating diseases and the similar conditions possible in a misdiagnosis. Certainly not claiming to be familiar with them all though. But this "atypical" thing has me at a bit of a loss.

This spring, six months out from a craniotomy for a benign brain tumor, I had my third episode/flare that led to my diagnosis. My lesions are several but small in an unexpected pattern (not perivenular), my LP, spine MRI and VEP are normal. And, my flares aren't sudden in arrival but are plenty wicked for me and level me out -- am just crawling out from this 3 month one.

My N is an MS specialist. She notes that I definitely have demyelinating issues and considers this atypical MS but doesn't think that I would respond to the CRABs. I pressed her quite a bit on this. One part of me says, "whew" but the other part is very concerned about doing everything I can.

While many of my symptoms are starting to ease up, my function is worse. Not terrible but I realize this is how it starts. Had a close call on the outside concrete stairs this morning. My legs never used to be as tight and sometimes wonky as they are now. I'm reading up on the diets and supplements (not much to modify on my diet) but am not ready to hang my hat on that.

Any of you familiar with this "atypical" situation? Thoughts?

Thanks,
Donna

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Hi Karen.
I guess I'm "atypical," too...
I started off with a general neurologist and started Rebif right away. I kept having what seemed like a lot of relapses with very similar symptoms- gait problems, limb weakness, and sensory symptoms. I guess it was only 1-2 relapses that never resolved, but I would get temporary relief from IVSM.
My neuro sent me to Boston to an M specialist because, "this isn't behaving like typical MS."
I've had 5 MRIs in just over a year and have only added 2 new lesion since the 1st. so it apears that the Rebif is working. The location and appearance of my lesions are characteristic of MS, but nobody's been able to explain why I'm so disabled so early on. I had no response from the last IVSM treatment, and have been left with bilateral leg and left arm weakness (and more) since Feb. and had to file for disability in March at the age of 28.

I think that things are complicated because I had a disc extrusion at C5-6 that went untreated for a long time. I had it surgically repaired in March.

I don't know why your neuro isn't recommending any of the standard DMDs for you, but some don't believe in prescribing them in CIS cases (doesn't sound like you fit into that criteria. Also, NMO and progressive patients usually don't respond to the ABCR treatments.

I think you should make an appointment to address your concerns with your neuro. Ask him/her why they don't think you will respond to standard treatment- and ask what you can do to fight this disease.

Hope this helps,
Kay

Interesting article Lyon, I hadn't seen this one - thanks. Overall I found it helpful. I don't know you but know you have a reputation of being forthright. So, are you trying to tell me I'm a psych case?! Don't answer that please!

Actually some of the sections touched on a few of my concerns -- I have some early peripheral polyneuropathy that's unaccounted for. My journey started with Rheumatologists and a couple of Neurologists before making it to an MS Neurologist. Even when I started suspecting MS, I was careful not to say that and just to see where they went with things. I realized that there were many lesser known conditions similar to MS. And, I just want to find out what's kicking my ass! Something is although gratefully I note that my flare has been ever so slowly receding. I think my concern at this time is that if she's not feeling sold enough on my case to recommend CRABS, maybe I should go back to a generalist and shake the tree some more. And, concerned with what appears to be some residual loss of function.

Kay, thanks for the post. Actually I've been pretty persistent in my discussions with the N. She does get the impact of my symptoms on daily life and acknowledged that my presentation was more challenging on a daily basis than many of her classic early-mid stage patients. So...then...?

Is the fact that your symptoms don't present in tight acute episodes the main factor for your N viewing the behavior as atypical? Hope you're doing well after the spine surgery -- that would complicate things -- sounds painful.

Appreciate bouncing this off folks as I figure out my next steps.

Thanks,
Donna

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Hey Bob,

I was just trying to get some lightness out there -- I'm not sweating it too much!

Actually, one of the things that jumped out in the article was demyelinating peripheral disease. I had a bit of demyelinating polyneuropathy show up on my nerve conduction study last year. I didn't pay much attention as the next thing we went over was that I had a brain tumor. So, it kind of got lost in the drama of other things. I don't think it would explain the level of my flare and symptoms but might be worth shaking that tree a bit.

Anyway, thanks for the article.

Donna

Donna,
I think the "atypical" part is that my relapse/s don't seem to resolve and the IVSM seems to give me a temporary reprieve from symptoms. It's hard to figure out how many acute attacks I've had. It's been a veritable waxing and waning of the same old shit for the last year.
My neck problems just complicate the picture. I still have neck pain because of disc issues above and below the surgical site, but the surgery has cured the HORRIBLE arm pain I had.
A brain tumor and surgery- yikes- that's some pretty traumatic stuff! How are you recooperating?
It's amazing just how far the medical field has come, but how far they've yet to go. . .
-Kay

p.s. I thought I was a head case after reading Bob's article, too.

Yes, one of the factors that led my N to say atypical is the lack of suddenness in my onset -- a flare comes on gradually and kind of goes all over the place for a while. I just know that symptoms that were new a few months ago are now standard.


Am glad that you have some pain relief from your surgery. With invasive surgeries like ours, there's quite a long healing time that most people don't allow for. Throw MS in the mix and it's hard to figure out what is what. I was almost working full days when the flare knocked me off my feet. Fatigue is a major issue after craniotomy and it was majorly amped up during my flare and still a significant factor that limits my function. With muscles that are prone to tightness/seizing, my incision site/screws still bug me as it's near my neck. Overall, I'm ok though. Relatively lucky depending on how you parse the situation.

Aside from pressure headaches and a few other things, I think it's mostly the MS that's getting me now (as if our body really separates these two conditions into neat packages).

Thanks for your response and take care.

Donna