Hi everyone,

Does anyone have any recommendation on where to go for the most extensive lab testing to find out what's wrong with me? I am willing to travel out of state.

I was considering seeing Dr. Klimas, even though she specializes in CFS. The lab testing down there is supposed to be very thorough. Unfortunately I called them and they are not accepting new patients.
http://www.nova.edu/nim/

Any recommendations? I am set to see a new Neuro at Weill Cornell here in NYC. I'm afraid theyre just gonna make me do another EMG and a few blood tests.

Glenntaj had a favorable experience at Cornell. I think he saw Dr. Chin there at Cornell in NYC.

http://weillcornell.org/rlchin

Thanks, I was planning to see Dr. Chin but the next appointment wasn't until another 3 weeks or so. So I am seeing Dr. Langsdorf who works in the same office next week.

I also see Dr. Chin at Cornell Weill. He is very easy to talk to, and totally accepted and answered my seemingly endless stream of questions.

I did get an NVC and EMG to rule out any motor involvement-which he didn't think I had any way, and he did test me for some obscure things. I also passed the sweat test.

I have currently been tested for everything that is known to cause small fiber neuropathy, and everything has been negative.

My presentation is also very similar to Glenn's-started as full body burning, and now that has subsided, but I get flares of other symptoms. Who knows what will happen in the future.

Dr. Chin is very experienced in autoimmune causes of neuropathies, which many neuros lack. He also made sure to order me a glucose tolerance test, even though my fasting sugar and A1C were both fine.

He gave me probably the most thorough physical exam I have had to date, and I have a lot of medical problems, so that's saying something.

He was a fairly positive person, but also honest about science's limitations about neuropathy, and his frustrations with it. He is actively part of research when it comes to autoimmune neuropathies, and stated that progress in research can be annoyingly slow.

I can't speak about anyone else at Cornell, but I do recommend him.

And your skin biopsy turned out negative as well? I don't understand how you can feel sensory symptoms but no nerve damage.

I actually went backwards. I was seeing another neuro (non-Cornell) and she wanted me to do a skin biopsy. I had to find a place on my own so I stumbled upon Cornell Weill Dermatology. I am waiting to hear a call back from them to do it. In the meantime, I wanted to see a Neuro at Cornell as well. Hopefully I can see Dr. Chin in the future. I will see how it goes with Langsdorf.

My skin biopsy was positive. Both ankle and thigh showed significantly low nerve fiber density. Only my motor nerve and larger nerve fibers were normal.

I had originally seen a neuro at Columbia Pres., I work in NYC, and he did the biopsy which was positive, so I went to Dr. Chin already with a positive punch biopsy result. I wanted to look deeper at a other possible causes, though, and I did a lot of research and landed on Dr. Chin.

He did all he could, and I feel confident that he'll help me in any way he can as far as charting and progress or worsening, and if I decide to go on medication, etc.

Ah ok. I'm hoping I don't have to repeat the EMG since I had one done a few weeks ago. I was hoping to get a full immune function workup and test for everything under the sun including any possible viruses. I am guessing this will more on the immunology/pathology side and the neuro could steer me in that direction. I just feel like neurologists don't do as much lab testing as they could.

I also hear Mayo Clinic gets thrown around a lot. Is this a better choice than seeing a neurologist?

I (and many others here) wasn't impressed with Mayo, but I'm sure they will do a ton of tests.

Personally, I think you'd be better off waiting the 3 weeks (that really is NOT very long compared to most specialists) for Dr Chin...Glenn and others all have good things to say about him.

I concur-if you're looking for someone who will be thorough, he's it. Just my two cents.