my doc about to diagnose me with cidp

    • September 16, 2017 at 12:28 pm

      I have had problems since march with muscle fatigue back issues.. spine doc says not much wrong with spine.. went to my sixth neuro took nerve test showed abnormalities in legs and arms..Since yesterday I can barely walk.. Im taking two little steps at a time..Ive also had breathing issues and saw two diff pulmonologists..I have grpound glass in my lungs which has gotten better the last couple months..Before he diagnoses me he wants to talk to his pulmonologist..Im no doctor But the more i read about it cider i have a lot of the symptoms..Can anyone give me advice this has gone on since march and got worse and worse..I thank god I have a job and good insurance..But this walking could affect my job..Im using a cane..This neuro seems very thoro from the hospital for special surgery..

    • GH
      September 16, 2017 at 6:05 pm

      If by “breathing issues” you mean loss of capacity due to weakening of the diaphragm, that is extremely serious and is the reason GBS and related conditions are considered a medical emergency. If you can notice changes daily, it could become a critical emergency soon. You must ensure that close attention is paid to your condition and be prepared to get to the hospital if it becomes necessary. Your neurologist should be aware of all this, of course.

      Do you have a knee reflex? Is the weakness in your legs approximately bilaterally symmetric? Can you stand on tiptoes (while supporting yourself for balance, if necessary)?

      • September 16, 2017 at 10:03 pm

        Hello, I have very similar symptoms/diagnosis, EXCEPT; the huge center I was going to, after 1 year, ran FNA (fine needle aspiration) fat pad (belly area) tests. They tested in-house, several times, until 1 year later they sent tests to Mayo Clinic, confirmed AL Amyloidosis. And now going to Mayo for 2nd opinion & treatment! This crap makes your joints & bones feel like you’re in a medieval torture chsmber! I also have M spike of IGg multiple myeloma, 30% marrow. (Bone marrow biopsy) Make sure they test & rule out those 2 evils! I also have CIDP inflammation and (polyneuropathy) both legs to hips. I had core biopsies on length of legs, “surface” nerves gone, & had emg (shock-conductance) deep nerves gone both legs/feet.
        I wish You the very best!
        Don’t give up testing process until you have all answers!!!