[hopeful]

Hi everyone,
I think I told all of you that my neurologist sent my paperwork to the national institute of health to see if they would see me.
Well I heard today and they rejected my case. I was really hoping they would see me. Actually, I felt like everything was hinging on them for a diagnosis.

A little update on my condition. I had a positive skin biopsy from my neurologist in PA. Then I went to Hopkins, they did their own skin biopsy and said I don't have neuropathy. They said probably Sjogren's even though all my blood work was normal. The doctor there said I could come back once a year for follow up to see if my blood work changed. Now you can see why I really wanted to be seen at NIH.

I think I would like to have another skin biopsy to see what it shows. I saw a doctor last year who was so rude and mean to me and said if Hopkins said it is not neuropathy then it is not. I'm so confused at this point. It sure feels like neuropathy. Of course my neurologist says his lab is reputable and the diagnosis is correct.

If you have suggestions, I'm open to anything. I live in PA and would even go to another state. My muscle weakness is getting worse and I'm getting worried again.

Hopeful