Reply To: CIDP again?

April 27, 2015 at 2:30 pm

Oh yes but in the early 80’s they did not have any Organization (GBS-CIDP) or Dr pushing to get a handle on Diminished response time and actual nerve conduction studies. While I was at Mayo ( Rochester Minn)a female Dr did the nerve conduction testing. The procedures and test guide lines were tedious and very nerve racking for me. She measured response times every where she could, It took over several hours to do all she had to do. She was through and reported the timing and probable cause to Dr. Bartleson who wrote the letter to my Neuro. I was breaking new territory here in Georgia.
Funny how things come around, My Neuro Dr Retired several years ago and he handed me over to a younger Dr. On our first visit we reviewed my history and when I mentioned Dr. Bartleson he lite up, He trained under this Dr. at Mayo and there had been many new things uncovered. He (new Neuro) was high on Dr. Bartleson and spoke well of him. Ok I’ve been seeing this new Neuro since about 2003 and I had very little problems so Neuro Dr and I just kept in touch. Two weeks ago We went in to see this new guy. I and the wife knew exactly what was going on with me. He questioned me and then looked up and said yep thats how it starts. Ok NCS and EMG (both test took less the 15 minutes total) were ordered and of coarse I flunked big time. My reasoning was well we sorta guessed the problem in the 80’s applied a treatment and it worked. Since that time the procedure (PP) came to be the best treatment until IVIG came along. We ,old Neuro and I even tried some of the MS treatments (Avonex). I have and had all the MS symptoms except Cognitive and Seizures. Emotional Changes were probably forced on by Treatments of Prednisone in the first few days before PP. (I do not tolerate that stuff it makes me very aggressive).
At this point I have been fitted with a brace to stop my foot drop from causing me to fall and break another bone. I am also (in PT) having the stimulator applied to keep the foot drop muscles from atrophying from no use. I am also going to see an Oncologist (?) tomorrow. I remember that my old Neuro sent my spinal fluid to California for testing. I ask why there?, his answer no labs on this side of the Miss could do it? I ask what are they looking for ,he said protein in the spinal fluid ?? Anyway my new Neuro had the Fluid tested close by and the report came back that there was something found in the test that is consistent with cancer. Ok In 94 I had a big Cancer bought, so maybe there is more. We’ll see tomorrow, after that I should start IVIG. The IVIG has been ordered but we have yet to commit to a Company. They seem to want to do it in my home? I have no problem going to the outpatient Oncology transfusion center, so why the extra coast of a in home visit? I use that unit at least 3 times a years for either for iron, blood or the med for Osteoporosis. I’m going to rest now as the Morning PT just flat wore me out. I have a horrible time walking straight (wall walker), I can not look around or hold anything and keep a straight coarse. Looks like I’m inebriated and need another shot.
I’m trying hard to ketch up on the cause and effect of CIDP that have been uncovered since I first was infected ?? How ever I got it, why and how to fix it.Thanks for the forwarded information.