New CIDP member

    • March 18, 2017 at 12:45 pm

      Hello all, just to introduce myself my name is Doug and I am recently diagnosed with the CIDP. My spinal tap did not show any elevated proteins, so the doctor initially put me on 60 mg of prednisone for 14 days now taper to 40 mg. The goal is to show efficacy and try to get IVIG approved. Had lots of nerve activity and aches in legs when starting the prednisone which after two weeks has subsided, have been exercising legs as I can still walk well. How does one know if the legs start getting better, I have had Bells Palsy before and the nerves coming back felt just like the nerves in the legs while under “attack” so to speak. I’ve noticed the last two days more activity with the nerves since I started coming down on the prednisone, but I’m not sure if some of the nerves could be waking back up “so to speak”, will any improvement in the legs also act/feel that way, or should there be no twitching or pulsing of nerves?
      I already have vitiligo and hashimotos thyroiditis, and compound heterozygous… so it just gets though dealing with these autoimmune issues.. I am still fairly strong, but as legs got worse over the past year, I thought it might be PAD had that checked but blood flow was good. I kept having problems and rear end and thighs wasting and figured out to see neuro… wish it was sooner, but still walking at least.. just weak fatigued legs.
      Any feedback would be great.

    • March 19, 2017 at 8:40 pm

      Welcome Doug, What tests confirmed the presence of CIDP? The disease if often preceded by GBS, did you have GBS? For how long have you been experiencing the symptoms?

      Last month I attended a GBS/CIDP conference where it was stated that recently quite a few new cases of CIDP have been incorrectly diagnosed and there is concern about this trend within the professional Neurology community. The incorrect diagnoses of CIDP have put insurance companies on alert and they are tightening their criteria for approval of expense treatments like IVIg.

      Are you in an area where there is a Center of Excellence within driving distance? It might be to your advantage to get a second opinion about what you have.

      If it indeed is CIDP, symptoms vary so widely between patients it would be hard to generalize on your specific recovery without more information. If you and your doctor feel you could be in a recovery period, it might make sense to start PT. They will test your strength and continue to measure it while you are getting treatment. If you are becoming stronger, the PT records will likely confirm it, and you will know.

    • March 19, 2017 at 9:45 pm

      Thanks for the reply… I will be honest my legs have bothered me for two years now. I attributed a lot of it to my thyroid meds which were switched a few years ago and they tried me on armour t4 t3 combo med this spiked my free t3 gave adrenal issues etc.. this affected me in so many ways it was a tough time.
      The last 2 months or so is when it really got where I could barely get through work as I walk miles per day. Legs spasming aching etc… finally my endo mentioned neorologist so I found a great one in Atlanta midtown neurology. He performed bloodwork and EMG same day which was abnormal. He set up spinal tap which showed nothing, but he says he is sure the CIDP is correct.
      I went 14 days on 60mg prednisone and after 9 or 10 days all of the twitching and activity stopped. Just went down to 40mg 4 days ago and now the legs are going crazy again, not sure if nerves waking up? Seems like it may be they are under attack again. Got a call in for him to call me.
      The goal was to show efficacy of the meds before trying to get the IVIG approved, I suspect he is concerned about approval due to the lack of protein elevations etc..
      I am not sure about the center of excellence around here… I feel like these symptoms match the disease for sure, and I’m assuming he ruled out stuff with the spinal tap etc… but you make some good points, just not sure what else this could be. I was not impressed with the EMG tech as he seemed to have issues getting what he needed, but what do I know.
      I think dropping the prednisone dose may be an issue… Im just not sure what I should be feeling you know. I was enjoying no spasms etc though I must say.