MS vs. GBS/CIDP

Interesting facts! Now, I would really like to know how many of you all had GBS/CIDP and later were diagnosed with MS. I came down with GBS May 2001 and was diagnosed with MS 9/11/06. Just feeling sorry for myself and seriously wondering what the odds are.
😮 Mary Jo

I’ve been diagnosed with an asymetric multifocal variant of CIDP for 3 years, which has essentially been confirmed by two teaching universities and Mayo Clinic. It has been somewhat refractory to treatment. My protein count on two LP’s has been only modestly raised, in the low 50’s. However, on my most recent LP, they also ran an MS panel, which uncovered well-defined oligoclonal bands in CSF which were not found in the corresponding blood sample. This is sugeestive of MS, although all NCV’s etc. point directly to peripheral demyelination, conduction block and axonal damage.

The positive O-band results did not compel any doctor look any further into possible MS. So, maybe the lines between all these CIDP variants and MS are kind of blurred. I had a brain MRI over a year ago that was crystal clear, but my absent reflexes, etc. are not indicative to MS. My treatments have been IVIG, high volume Solumedrol, plasmapheresis, and now back to IVIG and just started CellCept. Plasmapheresis helped me to halt a very severe episode earlier this year, and thus far, the renewed IVIG and now CellCept seem to be holding the homeostastis.

According to my neuro, there is no relation between MS and GBS. I asked him if I am at higher risk for MS since I had GBS, and he said absolutely no. But then again, with GBS being a poorly understood syndrome, how can he be so sure??? Autoimmune diseases are still mostly a mystery as to why they happen.

A few years back when I was seeing a new neuro., he ran all kinds of blood tests for MS, lupus, etc. and did the emg/ncv test to confirm my original diagnosis of GBS in 1997. Having all those tests ran is scary, and it is amazing how suddenly I am pleased with the diagnosis of GBS.

The first thing that was considered 2 years ago when I was dx with GBS was MS. My sister contracted MS at the age of 12, that would be 44 years ago. Because of our family history, my mother has Parkinson’s Disease, that was the first consideration. When diagnosed, I was 52 and for once age was on my side. Typically, I was way out of the age catagory for developing MS. Loss of knee jerk reaction, balance etc., everything was so similar when I walked into my PCP that day. So when the test came back with GBS instead of MS I was relieved.
I’ve kept up on lots of MS info over the years, my sister has defied all odds and although she has been in a nursing home for 14 years, she greets every visitor with a smile.

I continually remind myself of how ‘lucky’ I am especially after a visit with my sister. It could always be worse. There are a lot of people suffering worse than we are…and even though it is difficult to accept at times, we can remind ourselves there are better days ahead.

JayDee

My neuro first suspected a 4 things:

1) Very high spinal chord or brain stem injury
2) MS
3) Guillain-Barré
4) Viral Menengitis

Since the first 4 were easier to rule out or in he did head and neck MRIs to rule out the first two. Blood test ruled out the fourth one and while they were still ruling out other potentials and ensuring it really was GBS then I was started on IVIG. Many, many, many tests later I was comfortable with the GBS diagnosis when told the DRs were confident my initial presumtive diagnosis of GBS was correct.

I hadnt heard anything about a connection between MS and GBS but if MS is suspected its much easire to diagnose then GBS at least!

In the very beginning stages of my illness, I presented to the ER doctor with weakness in my knees & numbness on my palms & on the bottom of my feet. I also had no relexes in my arms or legs. I was told it was probably MS & sent for a complete set of MRIs. I was called the next day & told that I did not have MS, & so I was fine. When my knees began giving out a few days later & I went back, I was told it was probably GBS & sent to a larger hopital for a LP & EMG. I was then dx with GBS & given 5 PP in 8 days.

After I continued to deteriorate to quad status, I was sent by ambulance to the Mayo & would spend the next 3 months there. I was refractory to IVIG, PP, & even steroid infusions, but I did maintain my low level of functioning. I would be rediagnosed with CIDP after 6 weeks there. I remember at the time that my husband & I both thought that I had the worst possible illness one could get. Maybe because it had all happened so fast for me.

But now I realize, having gotten the ability to walk back, & about 80% usage of my hands, that I would rather have CIDP than MS. I know too many people with the progressive form of MS, who are deteriorating very rapidly. They cannot seem to get anything back. Anyone notice how many younger people now have autoimmune illnesses? My mother is 81 & healthy & we have talked about how few people in her generation had an autoimmine illness. What is going on with our generation? BTW I am 53 now, got sick at age 48.
Pam