Pinkynose says 'They say it takes a village…' But why do they make the Village Idiot the Neurologist?

Dave.

What makes me really angry is that I was pulled into this particular office by their webpage. It stated that they were "One of 15 Centers for Excellence in the country" as designated by the Neuropathy Association. I was so mad after my appointment that I tried to check out the Neuropathy Association and found out that it did not exist. It disbanded in 2008. I should have checked them out before my visit. Live and learn. This is a major university. I thought they would be above board.

--if one has the capability and one can afford it, it is often worth a visit to one of the true centers that both has practices in peripheral neuropathy AND has a major reasearch component.

The ones I talk about are:

Cornell-Weill in New York City (which is in partnership with the New York/Columbia Presbyterian system)
Jack Miller in Chicago
Johns Hopkins in Baltimore
Massachusetts General in Boston
Jacksonville Shands in Jacksonville Florida

There are others that advertise but I find it harder to vouch for them, even though they may have some good doctors (i.e., Mayo Clinic, University of California/San Francisco).

That is it in a nutshell. I have been to 5 of them. I remained with one and I am down to pain management and 6 month visits. He is very nice and not an egomaniac. He clearly says they just can't figure out why this is happening to healthy young people and that it is suspected to be some kind of an autoimmune process.

I have polyneuropathy through out my entire body and head and it is a complete mystery. I have given up on conventional doctors finding the answer. I have the diagnosis and lab work that tells me that my nervous system is damaged, but nothing else. It is extremely frustrating. I'm not losing hope though.

They do love that! You just cracked me up. I needed that.

Hmm. If you rock the diabetes you get to do the above on a quarterly schedule, at least I do...

Another thing that bad neurologist said that just left me with my mouth hanging open is that I could not have Lyme disease because I never had an EM rash (bull's eye rash). Even though I had a positive test. She is bad enough to be dangerous to other patients who don't know any better.

This is true. After a rather bleak several visits to Yale and being untreated for MG, I finally drove to Baltimore and experienced excellent treatment at Johns Hopkins. I now have new hope for my future.

That's wonderful news, DynaGuy! Can you share who you saw at Hopkins? They are only 30 minutes away from me. Had pretty much given up on neurologists.

I saw Dr Drachman in Neurology.

When I was going to Yale I was given 2 options. Prednisone, or Azathioprine.
Prednisone made me crazy. And Azathioprine has some side effects I didn't care for, along with the fact that it could take 8 to 12 months to actually work.

None of the tests given at Yale even proved conclusively that I had MG.

Once the EMG done at Johns Hopkins showed I have MG, the doctor prescribed 4 infusion treatments and Tacrolimus to be taken first, then followed by Celcept.

I'm still waiting for my insurance company to approve the treatment.

My experience at Johns Hopkins was first rate and I feel like I'm finally getting somewhere with this!

Good luck to you!