Am I misdiagnosed?
AnonymousNovember 7, 2006 at 7:03 pm
Four years ago I was diagnosed with recurring/remitting MS based solely on certain protein bands in my spinal fluid. Still, four years later, and many “episodes” or attacks, I still show no lesions on my brain or spinal cord. This has my new neurologist baffled. He wanted to say it might be GB except for the duration. Just a few days ago I found out that my real father, who just past away, had suffered GB in the past. After looking into it a little I find this chronic version and am wondering if this is what I might be dealing with instead of the MS. The only symptom I see that may be different is the reflexes. Instead of having no reflexes in my knees and ankles, I seem to have hypersensitive reflexes. I recieved the IVIG treatment three years ago and it actually got me out of the wheelchair and onto a cane for almost two years. Now, after my last attack, I am back in the wheelchair and am sinking gradually. Any comments, or advice would be greatly appreciated. I am just as baffled as my doctor, is this a direction I should be looking in?
Thanks in advance,
AnonymousNovember 7, 2006 at 7:48 pm
hi rex & welcome,
good comprehensive overview of your med history. the fact that the ivig helped you, amoung other things, tells me to strongly suspect recurring gbs opposed to your gbs residuals acting up. it may eventually wind up as cidp [chronic gbs]. i don’t buy ms. that in itself, the ivig helping you, should have your new neuro Rxing ivig to see if it helps again [shotgun approach when all appears unDxable]. hypersensitive reflexes, although unusual, is an uncommon symptom of gbs. also normal reflexes do not rule out gbs. if your neuro will not Rx ivig asap, demand an immediate emg/ncv. if the ncv part shows damage, he must Rx ivig or i think you need a new neuro. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 10, 2006 at 10:01 am
I am thinking, from the slower onset of symptoms, & the fact that you have never been totally paralyzed, that it might very well be CIDP. If IVIG got you out of the wheelchair in the past, then why isn’t your neuro prescribing it for you now? It is all about quality of life; maybe it is time to find a new neuro, one who will dx your illness correctly. It doesn’t sound like MS to me…
AnonymousNovember 12, 2006 at 2:11 pm
I am in total agreement with everyone’s answers here. If IVIG did the trick it sounds like this could be CIDP and your Neuro should be giving you more treatments of it.
No lesions on the brain and spine is a good indicator that you don’t have MS.
Try to get another opinion with a different Neuro.
Wishing you the best.
AnonymousNovember 13, 2006 at 12:50 am
Before I had my diagnosis of CIDP, I was pretty concerned about what might be going on. In our first meeting, my neurologist sensed my concern and asked me about it. I said I was concerned about MS or ALS, pretty much the only two nerve diseases I had ever heard of. He said I probably did not need to worry about MS, as my reflexes were slow, and in MS they are generally fast.
So the reflexes are indicative of the disease, apparently the first clinical clue. Still, normal reflexes can be present in both CIDP and MS. And it must be possible for them to be in the wrong direction (fast in CIDP and slow in MS), just because people are different.
I have a friend with MS who is helped by IVIg. While unusual for it to be much help in MS, it clearly can work. Perhaps you are one of those people.
Your neurologist should do a nerve velocity conduction study. It is a painful test (I take a tooth guard to bite down on), but it is about the best way to decide if your problem is peripheral (nearly everything not brain or spinal cord) or central.
Get him to do it soon or refer you to someplace that can. The results may well change your treatment course. If MS, you might be helped better with the standard MS treatments. If CIDP, then IVIg, therapeutic plasma exchange, corticosteroids, and/or cytotoxic immunosuppressants will probably help.
If you can, it never hurts to get a second opinion.
Godspeed in this.
AnonymousNovember 15, 2006 at 9:17 pm
I definitely has an asymetric variety of CIDP called Lewis Sumner Syndrome, or MADSAM. When I had a spinal tap, it was found that I have well-defined oligoclonal bands in my spinal fluid, which are not present in my corresponding blood sample. This is a finding consistent with MS, and these are probably the proteins you refer to. However, I do not have MS – no lesions on the central nervous system. I do have completely absent reflexes in upper and lower extremeties. However, my CSF protein count has never been higher than 53. I also would urge an NCV/EMG test. There are people, like me, and maybe you – – who don’t fit the typical clinical pictures.
AnonymousNovember 15, 2006 at 11:21 pm
I would agree that it sounds like CIDP but then I not a doctor. 😉 I have had the verve velocity conduction study done twice. I wouldn’t say it was the most pleasant experience, but it wasn’t that painful. 🙂 From some of the other posting it seem like there are varying reactions to the test. Hopefully you fly right through it.
Best of luck 🙂
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