Quote:
Originally Posted by glenntaj
--from what I have been able to deduce (a lot of it from the literature that comes out of the researchers/doctors there) is very good at determining conditions of the central nervous system--dealing with unusual seizures, headaches, presentations of demyelinating disease. When it comes to peripheral nervous system situations, while Dr. Dyck is a world-renowned reseracher, less seems to come out of there than out of places like Johns Hopkins or Cornell-Weill.
Hopkins is the place skin biopsy was invented and normed (see papers by McArthur, Cornbluth, Mogehkar, etc.) and there is a lot of research there into rheumatological causes of neuropathy. Cornell-Weill is probably the leading research center into NON-rheumatological causes of autoimmune neuropathy (they have done pioneering work into anti-nerve antibodies and the connection between celiac and neuropathy, partly due, I am sure, to the access to the Celiac Center at Cornell/Columbia--both Cornell and Columbia are part of the NY Presbyterian health alliance--see papers by Latov, Sander, Chin, et. al.).
What I've always liked about Hopkins and Cornell is that the researchers there also run clinical practices; there's a lot of cross-pollination between clinic and lab.
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So, in your opinion John Hopkins would be a waste of time if I already go to Weil Cornell?
I have been to 4 rheumatologists. Two of them local in upstate NY.
1.One who said my ANA is probably just due to the fact that I had EBV at one point and he doesn't think I have AD because my joints are so good.
2.Then I went to Weil Cornell/Columbia Pres and they did thorough testing and came up with nothing (except the ANA even more elevated). I was told the ANA can fluctuate and also be due to other inflammatory causes. The doctor there also commented on how great my joints were. He thought I had some muscular injury and told me to wear a cervical collar, try cymbalta- if it doesn't help- throw it out and call him in a few weeks to check in and to make an appointment with a physiatrist there. I never did follow up with him.
3. The neuromuscular doctor that I settled with at Weil Cornell sent me to a rheumatologist from Mount Sinai and she came up with a borderline lab report for sjogrens lip biopsy. She said it wasn't conclusive. She offered plaquenil, and said this might be autoimmune. I then started getting the livedo from the sun all over my thighs (where my most significant nerve damage is (according to sfn biopsy). I think then she determined it must be autoimmune.
4. There wasn't really any point to travel far to see her since she had no plans or real help so I found a young local rheumatologist locally, gave her all my files and she was intimidated because there was no sure diagnosis, but that she would give me plaquenil if I wanted.
All kind of a waste of time.
Especially since my two daughters are randomly getting the livedo on there thighs (all of us within 2 weeks of each other). It would be a heck of a coincidence that all of us came down with an autoimmune vascular problem at the same time.
So I guess after all of this ......
It doesn't seem to me that Weil Cornell is the best place to figure out non autoimmune causes of neuropathy because I have had no luck. If they are the best, and John Hopkins is third..... that's not looking so good for me.