Reply To: New doctor finding him strange

My symptoms have been extreme pain in my lower back, buttocks, thighs and at times my pelvic region. I’ve also had times where I’ve gotten up and my legs have just stopped working. This has gone on for a year while different test were done to rule out things like bursitis and I have seen a neurosurgeon that says I have no problems in my lower back. Finally my neurologist found I was much weaker than usual and ordered the EMG and the neurologist that did the EMG diagnosed the CIDP in November. I waited till my neurologist called me and he also said I had CIDP and since I live 2 1/2 hours away asked me what hospital did I want to have the spinal tap done and the IVIG fusion at and I told him. I briefly had contact with him early December and he said he was working on getting the approval from my insurance.

No I still have not had a spinal tap. However I found someone who got in touch with my neurologist that I normally see and he is suppose to be calling me early next week. I have no idea how I fell through the cracks with my neurologist or if he will indeed call me. I’ve seen him for an extremely long time for a cervical neck injury that I have and then these new symptoms that started have been the worst pain I have been in. I always thought my neck pain which goes down into my back was really bad but this I cannot get comfortable and it hurts to sit.

Since I was getting a bit scared I went to see this new neurologist that I didn’t care for. He is the one that said that I had to much pain to have CIDP and also said I was to strong. Not sure where I got that I was to strong when I have to have help opening new jars of anything. What ever this is has started effecting my arms and I have noticed they are getting weaker also.

I think if this new neurologist would have taken the time to ask questions, he might have figured out I had a masked face from being extremely tired for one getting up at 4 am, and I”m tired in general many days. I have trouble reading or driving very far because both cause me to become sleepy yet I can watch a movie so some things do not make sense to me. I have also had bladder control issues.

So on the advice of the new neurologist I went to a urologist who asked the same thing, “Why didn’t he order a spinal tap?” So the urologist just has done the normal tests and so far has not found any problems. I will have to have a sonogram, but the neurologist that did my EMG told me that bladder control problems were also a sign of CIDP and once I got treatment that it would go away. I hope this all makes since. I have the neurologist that did the EMG, my regular neurologist and the new neurologist.

I am very comfortable with my neurologist i have seen over the years so I just hope he calls. I don’t mind doing another EMG as the new neurologist wants me to do because I don’t feel anything when I have had them done, but I keep being kicked down the road and I just wish I could get the spinal tap done so I know what is going on.