Hello from someone new to thinking about CIDP

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1

I wanted to put some of my history together to introduce myself. Today I was motivated to write something now that I have joined 2 CIDP groups. so here goes.....

I am new here and am trying to figure out if my symptoms fit CIDP. I have spent the last 41 years being diagnosed with one autoimmune disease after another. I have always had a very high ESR and CRP. I was diagnosed with RA at 18, then central nervous system lupus, which was eventually changed to MCTD. Then myasthenia gravis was added. The doc was just about to test me for neuromyotonia when I ended up in crisis in the ICU in February and got 5 IVIgs. When I got to the hospital they thought I was having a stroke. 12 hours after IV solumedrol and IVIg, I was fine. For the first time in a very long time I could walk, talk, breathe, etc. and all the cramps, fasciculations, twitches, spasms, etc went away. 2 weeks later it all came back. I used to have horrible neuropathy that disappeared about 2 years ago. Well, now it has suddenly showed up again, When the neuro tests my reflexes, I don't have any. Last week he suggested my nerves are inflamed and maybe I really have CIDP. I think I just have a little bit of every autoimmune and neurological problem there is. Soooooo confusing! In years past, I have repeatedly been sent for MS and ALS work ups. All I know is that for a couple of decades now, IVIg makes me much better. I was on very high doses of prednisone for a couple of decades before that. I often wonder how any doc can figure us out! I also wonder if there is a certain subset of people who are just plain baffling? Another strange piece to my puzzle is my body's propensity to get weird viruses. I had mono really bad in my 20's and still show EBV. Three years ago I got West Nile Virus, and that has messed me up pretty bad. Once I got WNV, all my antibodies to my past autoimmune stuff disappeared. I almost hate to add this, but I have also been hit by indirect lightning 3 times. There is a lot more. I don't think I have ever seen a doc who didn't mention something about me being a complicated patient. My bro is an X-ray tech. He says being called "complicated" is shorthand for being a PITA. Sigh.....

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Yes, you defy any normal diagnosis. There is just too much there. Just make sure your doctor has accurately helped CIDP sufferers in the past. It is a rare problem and many neurologists may not really have much experience with it.

3

Wow you really have a complex medical history. I hope you get a correct dx soon and I shall add you in my prayers

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As long as IVIG works, go for it. Doesn't really matter what you are named. Only matters what makes you better.

Of course, your insurance company must approve it.