GBS residuals masking symptoms of other conditions

    • Anonymous
      May 16, 2007 at 12:24 pm

      My understanding of autoimmune disorders is that people who have one usually end up with several different autoimmune conditions over time. For example, I have endometriosis (which some believe is AI) and also had GBS. Incidentially, during my diagnostic adventures with GBS, some lesions in my brain were discovered during my MRI, which I have since learned may be suggestive of MS.

      I was also having some vision and coordination problems pre-GBS, which is part of the reason why a dx of Guillain-Barre was so elusive. The docs were all fully expecting me to have MS instead of GBS, especially after the abnormal MRI. However, the spinal tap did not show the O-bands that confirm MS. The ascending paralysis and respiratory problems are what finally tipped the neuro off to GBS. So the MS question waits in the wings. I’m having another MRI in August to follow up with that.

      So anyway, as I recover from Guillain-Barre, I experience daily fluctuations in weakness, poor coordination, tingling and numbness in my face and extremities, double vision, and “staticky” vision (for lack of a better description). I also understand that any of these things might stick around long-term as GBS residuals. So how in the world would I ever know if what I’m experiencing is indicative of MS or if it’s just GBS?

      I’ve also learned that like GBS, the diagnostic criteria for establishing that someone has MS are not very clear. There have to be lesions, OR o-bands in the CSF, OR certain results in evoked potential tests… PLUS “flares” of certain neurological symptoms. While there is some clinical data that certainly points to MS, there is also a heavy reliance upon symptoms and flare-ups to corroborate the dx.

      Since both are demyelinating diseases, it appears that many of the symptoms are the same. I’m certainly not anxious to be diagnosed with something else (!!!), but I’m also aware that if I do, in fact, have MS, it’s extremely important to go on medication that slows or stops progress of the disease as soon as possible. Thinking of the possibility that GBS residuals could end up masking MS symptoms is scary, as it could cause unnecessary delays in starting timely treatment.

      But I also don’t want to be a worry-wart, calling my neuro at any little symptom of numbness, tingling, or double vision because I don’t know what’s causing it. The last thing I want is to become a hypochondriac… one of those people with a little note on her chart and an eyeroll-smiley in big red marker on the front page. I don’t want to freak out about every little thing worrying that something is MS and not GBS, but I also don’t want to be dismissive by saying it’s GBS and not MS if it might really be MS… even though it might NOT be MS. Make sense? 😮

      I guess I don’t really know what I’m asking here. I suppose I’m just really concerned about this and needed to get it off my chest. Sometimes it helps just to talk about things to people who understand. So thanks to any of you who read this long post…

    • Anonymous
      May 16, 2007 at 1:32 pm

      Hi Suzanne,

      I understand what you are saying. That is why every few years I check in with a neurologist and get some tests ran to make sure all is okay, or status quo. I run a high white blood count (17.6) so the docs always run cancer blood tests. I certainly do not want to be diagnosed with anything like that, but it is good to know where I stand. With our history of GBS and its rarity, we never know. Better to be safe!

    • Anonymous
      May 16, 2007 at 3:02 pm

      Hi Suzanne,

      There is a difference between GBS and MS. But yes, alot of the symptoms are the same. Alot of people have been misdiagnosed with GBS only to find they really have MS and some have been diagnosed with GBS and it turned out to be MS. From what I also understand some people with GBS also present with a lesion or two on the brain. With MS there are also lesions on the spine.

      MS is of the central nervous system and GBS is of the peripheral system.

    • Anonymous
      May 17, 2007 at 1:22 am

      Ladies, I too had endometriosis, AI, then in 2001 was diagnosed with GBS, paralyzed for three months. Sept 2006 I was diagnosed with MS. My neurologist has assured me that I truly had GBS and the MS is separate and in addition to the GBS. I understand that this is not terribly uncommon. I feel that the MS started around a year after the GBS.
      What kind of luck can this be!! I hope that you find the answers that you are looking for and if necessary can get on the medication asap to hopefully slow down or stop the progression of this terrible disease. Best of luck to you!
      Mary Jo