Atypical MS

[SOONERMOM]

I just read a post that said that atypical MS is usually PPMS.  The MS specialist told me that I would be considered "atypical" if I did have MS, partly because I have had symptoms since Oct. with no let up.  When he said this he glanced up from all of my records and looked me right in the eye --anyway I don't want to read too much into it or anything.

After requesting my records from my regular neuro and reading about things that he saw and NEVER mentioned to me, so I guess I just figure they just don't tell you everything.

Are some of you out there considered atypical without being considered PPMS?  I have also read that PPMS is associated w/spine lesions and few brain lesions.  Is that true?  So far I just have brain lesions.

Sorry, sometimes I feel like I somehow know less than I did a few months ago.

Stacey

[Quixotic1]

Actually the statement is backwards.  PPMS is always atypical. So when there is no good history of relapses then the thoughts should begin to include PPMS in the differential.

However, many, many cases of MS present with enough variations from the norm to be called atypical.  I was.  I think those in Limboland who actually do have MS are are atypical.  That's why they didn't just walk in a get their diagnosis with the coupon like some people do.

Quix

[shoshin]

I think maybe the idea of "typical" MS (which is probably under-represented on this forum) is not necessarily incompatible with a wider range of individual presentations of symptoms and signs than most diseases. Sort of like Eleanor Rosch's idea of a prototype, where the "typical" examples of a bird (robin, sparrow) are more easily recognized than the outliers that are still birds (penguins, ostriches). Diagnosing MS does seem to be slippier than a lot of things, though.

The relapsing-remitting pattern is perhaps more prototypical of MS and thus easier for neuros to recognize. PPMS seems to be harder to diagnose partially because of the lack of that pattern (the McDonald criteria are different to try to make up for that).

I don't really know what neuros mean by "atypical" (although the neuro who dx'd me used that word when I complained that the things I was reading about MS didn't quite sound like me), but I suspect that even with the wide range of variations of MS there are more and less usual variations.

This website (http://www.healthcentral.com/multiple-sclerosis/c/428/18973/relapse) says that a relapse lasts from 24 hours up to weeks or months so I'm not sure five months is too long to be a single relapse.

Just my scattered thoughts... Hope you all get some real answers soon!

Sho

[SOONERMOM]

I am undiagnosed.  The MS specialist said that if I DO actually have MS it would be considered atypical- he really didn't think that I have MS.  I think my reg neuro has thought MS for a while now.

I am completely  confused w/it all!  I just know that I am getting worse while the doctors keep saying "I don't have a diagnosis for you"

Stacey

[CtResident]

I keep seeing where folks are told they are atypical. And yet all the stuff I've read says that each person exhibits signs/symptoms in an individualized way.

So why the use of the word atypical?

What exactly is typical MS????

Are the drs. in a quandry, unable to figure it out, so they just slap that label onto the diagnosis? Is it admitting confusion? Is this atypical label coming from a general neuro instead of an MS-specializing neuro?

Could that be the clue and an atypical diagnosis doesn't really exist?

Haven't eaten lunch, maybe my brain cells need nourishment, because this sounds like I'm rambling.

Suzanne  

[SOONERMOM]

He told me I was atypical because of length of symptoms and location of lesions.  I have @13 in the deep subcortical white matter.  I had a c-spine which was free of lesions.  I have had major migraine  problems also, I have always had them but they are just out of control and different than the previous 20+ years of my life.  It started (Oct. 2nd) w/a couple bad nose bleeds (which I had never had) and the second was w/a migraine.  

I then developed a numb spot on my face w/slight swelling and then no swelling, only numbness.  Eventually had all kinds of paresthesias all over the trigeminal areas on left side of face.  Then had my left arm go numb a few times, then leg.  My reflexes started testing hyper last month, and this last week, I started having spascticity all on my left side.  I hurt from ankle to knee to hip and I feel like I can't wear certain "taller" shoes right now because I am not as steady.  One night, I was having spasms all on the left side including just the left abdominals.  WEIRD feeling

I had VEP which was normal, and every blood test has come back normal for the mimics.  I had a few more done last week, that I expect to be normal as well.

I think some of my "atypical" symptoms are due to migraine issues, not being able to tell I have  one due to numbness and just ending up w/throbbing, aura, and not pain.

I am also starting to have a few right sided issues w/foot and top of face.

I know it started "atypical" but really, now it is starting to sound more "typical" to me anyway!

Stacey

[essdipity]

My MS is considered atypical, and I've had this last round of symptoms since September, sometimes a bit better or worse, and some I've gotten used to so it's hard to say. However, I've had definite relapsing-emitting several times in years past, so have a DMD prescribed. Lately I've been extremely fatigued.

Haven't had any spinal MRIs since '06, but till that point I had no spine lesions.

ess

[risnerrose]

My MS neuro referred to my presentation as atypical and has now held off on a diagnosis.  Do you mind describing symptoms, lesion load, diagnostic tests, etc.?

Sherry

[SOONERMOM]

Good to know!  Maybe it's about to END!!!

Stacey

[cjacks]

Stacey

So because you have had sx, for five months this is considered atypical .. I had sx. for five months , july to dec.   No one has said that I don't fit because of that . ??  Other things maybe , but not duration . The first 'flair' was the exact same months in 06 weird ..

I'm on my way out ,    choa      

Jo