Quote:
Originally Posted by 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 |
It sounds like you need to continue your search for a new doctor. I have gone through three before finding one who really understands and spends the time to help me. And it was actually my gynecologist who recommended her! I too traveled to Hopkins and had no clear cut diagnosis after countless tests and both a skin and lip biopsy.
The first neurologist told me my EMG/conduction studies showed definite small fiber neuropathy. The second looked at her test results and disagreed but said my description indicates neuropathy-that the testing does not necessarily show the damage until it is beyond repair (which may be good news for you). Hopkins said their EMG/nerve conduction shows nothing but the skin biopsy showed innervation of sweat glands leading to small fiber neuropathy symptomology. And also that my bloodwork indicates Sjogrens but my lip biopsy came back negative. Since the treatment in either case is to manage the symptoms, at this point my action plan is to manage the pain and fatigue and try to pinpoint and avoid triggers. The doctor I have now, who I LOVE, says many patients have "clinical" neuropathy that does not show up on any testing. So there you go....this could be your case as well.
It is SO frustrating and I feel your pain (literally). Hope you find this forum as useful and supportive as I do
