[#1 BROKER]

HI Everyone!

I am a new member to the board and thought I would introduce myself. My name is Robby and reside in NYC.... Have had Small Fiber ON for about ten years. Have had severe burning thruout my whole body, face, arms, legs even mouth..... I have gone to some top Drs and really no one has helped me. I just had IVIG about 5 weeks ago and it made me SOOO SICK with chest pain as it was administered too fast....

I am trying to withdraw (with Dr.) from Klonopin to see if that is some of the burning...

Does any fellow NYC folks have a good Neurologist to recommend????? My guy does not listen.....Hope everyone is hanging in there and enjoying the weekend...

Robby

[Alffe]

Hi Robby, I can't help you with finding a NY doctor but wanted to welcome you to NeuroTalk. It's a great place to makes friends and find support.

[GUMBY]

Hi

Have you been to any top med people from N.Y.U. or Columbia? Sorry about the I.V.I.g. rate. Did it help you at all. Maybe if it was run properly????? Happens too frequently. As far as neuro's not listening.....well a lot of us have experienced that too. There is a doc who is very good in my opinion, thats all it is, you may not agree but if you want his name, i will private message you, if you want. If you have seen him because he is well known, you can scratch him off the list. There is also someone else up in Columbia too. I am thinking you meant PN in your post. There is a PN board here too. Just keep scrolling down to it. Best of luck

[Alffe]

Hi again Robby...here is the link to our PN forum...

http://neurotalk.psychcentral.com/forumdisplay.php?f=20

Perhaps someone there can be of help.

And thank you Gumby. *grin

[glenntaj]

--who know peripheral neuropathy, THE place for the most compehensive work-up and analysis, as Gumby alludes to, is the Cornell-Weill Center for Peripheral Neuropathy on Madison Avenue.

Cornell-Weill is affiliated with the Columbia Presbyterian health system, can draw on all its resources, and it is run by Dr. Norman Latov, who is one of the best known neuropathy researchers worldwide. All the docs there are also researchers, and they are very up on current research in the field, including he use of skin biopsy for small-fiber neuropathy, IVIg treatment, nutritional causes (celiac/gluten sensitivity, vitamin deficiency), and the like.

Also, the docs there are not quite typical neurologists (they will actually talk to you); the nature of the practice means they can spend more time in a visit than most practices can, and they do not seem to mind knowledgable patients.

[dorrie]

Hi Robby! Welcome to Neurotalk!!