Hi Echoes,
I have been trying to get the telephone number of John Hopkins from my doctor's clinic but to no avail. During my last visit to the neuro who did the skin biopsy, he gave me me a vague response about my interest in knowing exactly the "numbers" of my nerve densities, whether there was excessive branching, swelling, etc. He was forceful to say that I dont have a peripheral neuropathy (this is everytime I made reference to my condition). I dont know how to contact the lab because they were asking for a reference number. It is frustrating. Doctor does not want to pursue other tests and does not even want to give a follow-up skin biopsy in the future. Now, I am left with no firm diagnosis while my symptoms are more than when it started 7 months ago.

the first thing you need to do is find a new doctor, but i think you know that already.
did you get a copy of the test results? there should be some information on there that could be used to ascertain contact information.

I already requested for another doctor, but I am still waiting for the approval from my insurance as this will already be my 4th neurologist.

I tried calling the Cutaneous Nerve Laboratory of John Hopkins to inquire, but they were asking for a reference number from my doctor. The more I read in this forum how important it is to know the exact nerve densities and other hints on my nerves that could help in the diagnosis, the more I am frustrated dealing with the uncooperativeness of my doctor's clinic. Though, my written report from John Hopkins states : "The epidermal nerve fiber density and appearance are within normal". The word appearance gives me some consolation that this may mean that my nerves do not have swelling or branching. I am not sure, though. I am just trying to console myself with this positive thought when I feel so uncertain and anxious.

Keep in mind, if your problem is happening at the dorsal root ganglia level, the skin punch may be normal.
The skin punch biopsy only shows the end points of the nerves.
The dorsal roots are the ganglia along the spine, where sensory information is processed, and transferred to the brain. These can be damaged by toxins, toxic drugs, viruses, bacteria, trauma, autoimmune attack etc.
http://neurotalk.psychcentral.com/thread170562.html


Only the new MRI procedure outlined by en bloc can say for sure with this problem. It is difficult to get this diagnosis, and treatments still are lacking for it.

I posted some of that information on Clay's post.

It may be that the lab only needs your Johns Hopkins Clinic number...as the reference number. Everything at JH is filed under the individual's clinic number. You should have this on any clinic note, lab, etc.

Ideopathic under HIPPA you are entitled to a copy of your test results. Those test results may have the reference numbers you need. Call the neurologists office and remind them that under HIPPA they must provide them to you.

I'm making a skin punch biopsy thread on the SubForum.

It has some links to Glenn's posts, and today I found some more
sites on the web, with photos showing nerve fibers decaying.

Having a picture might help with understanding.

http://neurotalk.psychcentral.com/thread168511.html