I am excited!

September 5, 2009 at 8:07 am

After reading the responses to my request for a CIDP diagnostic doctor this morning, I finally feel like I have some options! Thank you so much!

I plan to contact my neuro on Tuesday and see if he can refer me to Dr. Gooch at USF. One of my 2 sons that have MS goes to USF and sees an excellent doctor there, Dr. Stanley Khrolchek (not sure of the spelling). He specializes in MS and Fibromyalgia.

If seeing Dr. Gooch is not an option, I will see if I can be referred to Dr. Wilson. I know I need to have the nerve biopsy to get the true diagnosis. I just want to have it done right and read accurately. My neuro said the doctor he uses will send it to Mayo to be read.

If I can get good medical care near my home I will be thrilled! If I have to go to Rochester to get it, I am willing to do that. I am so tired of getting sicker and more disabled and feeling like my doctors are not even familiar with my problems.

The only diagnosis the neuro is willing to give me is idiopathic neuropathy. I read somewhere that when you get that diagnosis it is time to find a doctor who is willing to dig a little deeper and find out what is really causing the problems. He has me on the Solumedrol to see if I have a positive response. If I do, it will tell him I most likely have an autoimmune disorder.

I am more frightened by my problem breathing than the pain, fatigue and lack of feeling in my legs and arms!:eek: I have been through all the pulmonary tests and there is no problem according to the doctor. BUT…if I exert at all, I am huffing and puffing. I also feel like I have someone sitting on my chest most of the time.

I have learned so much by reading the posts here daily for probably 6 months now. It is so comforting to know you are not alone. One doctor called my symptoms “bizarre”, then I read on here that others have numb lips and tongues, feeling like cold water is being poured down your leg, unexplained breathing problems, etc.

Thank you for sharing,