[skipsing]

Greetings - this is my first post. Great community!
I have a good friend just diagnosed with CMT. The neurologist who diagnosed it has zero bedside manner, which is a fine thing when doling out news that is, initially, a total FREAKout.

In the event someone on this list lives in the Washington DC/Northern VA area, please share the name of your own neurologist if you are pleased with that relationship. Thanks! (My friend will hopefully be joining this community any day now ...)

[nide44]

I go to Johns Hopkins Neuro Dept, in Baltimore.
Recommend it highly.

[dahlek]

The BEST place to test is Hopkins. Especially for the DC area... But, There are other resources to check out. Depends if you are in Md or VA or DC..tho.
I am in No VA and I can't suggest nor advocate any particular doc for you in VA.... I did find one tho that met my needs and got me the treatments I needed! Tho to get the diagnosis? I ended up with the head of Georgetown's Neurology Dept. I also had tentative appts with Hopkins and w/ George Washington - but G'town was FIRST ergo I went. Tests were chock full of blood work and scripts for MRI's and CT's [elimination stuffs], The recommendation to my neuro was to do 'immune-related' blood panels after lot's was crossed off the 'possible's' lists. Scheduling all the blood work, spinal assays and conduction studies as well as the MRI's etc. took about 4 months plus another month waiting for blood work results. A loooong time when you hurt!?
As for finding docs? Are you in a plan which has 'preferred providers'? Grill them from what you've learned here about how familiar docs in any practice are w/ neuropathies. Also ASK any and all docs you go to for any input.. Do you know of good docs that deal with neuropathies? [My podiatrist, Gp, Gyn and Dermatologist all gave me 'names' to zero in on] Then there's always the 'Washingtonian's' TOP docs series that comes out about every other year.
Once you get 'zeroed' in on? The who docs? Call...Are the staff responsive to a 'cold caller'? Some are not. Some admit that their docs 'prefer to treat' other issues etc.
Then Go and GET second opinions! It's a chance to both see if you like a doc? But also 'interview them' and if the two of you might be workable together.
Lastly? Take the 'names' you prefer and research those names in terms of whatever research they might have done! The tone of such papers can tell you in advance whether they mite be in sync with you!
It's a crap shoot! Sorry that I can't be less blunt? But you are either gonna like or trust a doc...or NOT! This physician can hold your long term well being in their hands! So you have to be honest and also feel comfortable in BEING honest. That's not easy to do.
I've seen 6-9 neuros in my 7 years of PN Plus. And I'd only trust truly three of them. Personalities/egos/professionalism all come into play. You have to and MUST follow your instincts! Please let us know how you fare? Be aware that most appts are 'booked' 3 months ahead...Ask for a cancellation if possible and be prepared to go a drop of the hat! Worth it! I am testimony.
Hope and keep heart! -'s - j

[Mere]

I have a good neurologist local to me, but in the past, I have had excellent care at Georgetown University. I was hospitalized there a few times, and had surgery there as well. I have also had good experiences at Hopkins and had a very rare condition diagnosed there (but I did not go for neurological reasons).

I currently have a gastroenterologist at George Washington University and ONLY go there because my GI doctor is a specialist in motility disorders. I will say that I very much dislike going to the GWU outpatient care center. It is very chaotic and nearly impossible to get a follow-up appointment within a reasonable amount of time.

Best of luck to you in finding good care.

Mere

[dahlek]

My experiences at GWU were so-so. My diagnoses was gotten by the head of the neuro dept at G'Town.
This guy: http://www.georgetownuniversityhospi...&doctorid=4428
Got to see him pronto due to a cancellation.. Got tested out the wazoo plus and my local neuro took it from there plus. Took about 4 months from GU appt to diagnosis then treatment.. These things don't happen fast enuf for us? But IT HAPPENED! And I'm a happier camper [tho still hurting] because of if all.
DO please let us know how you are doing/faring in your efforts? We care, we've been there and we know how scary it can be! 's - j