Reply To: New CIDP member
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.