Reply To: Your top signs that your CIDP is coming back/getting worse

March 29, 2017 at 9:39 pm

Bryan, sorry to hear you are going through a down cycle. Glad you are approved for the IVIg treatments and hopefully you will rebound like you did in the fall. I was feeling like I was going backwards and then today I met with my new neurologist and after some strength and other tests he said I was doing extremely well and thinks the early diagnosis is really weighing in my favor. Couple of interesting points, he ordered an MRI to check my lower back to make sure that spinal stenosis (narrowing of the spinal column) isn’t in play in my case. But given that I have had no back pain whatsoever, he just wants to rule it out. Was surprised insurance approved it so quickly. I had a long list of questions for him and he took plenty of time with me to answer them. When I asked if the tingling nerve activity in my lower legs was my myelin being attacked, his reply was that it could be but that the same feeling can also be the nerves going through regeneration. I am going to go with that answer 🙂 So as I was preparing for the worse I left feeling a bit upbeat. The crazy mental challenge of this disease can be worse then the disease itself. Stay positive and let us know how you are doing. Jeff