Treatment - Washington DC

Hi All.

Would any of you know if there is a neurologist that specializes in the treatment of MAV in the Washington DC area? Trying to get some answers. Much help would be appreciated (:

I am sure there are probably many doctors in that area, otherwise you are close enough to take a ride up to Johns Hopkins in Baltimore. They seem to have a great headache team that treats this and are very familiar with the syptoms. I emailed Dr Rosenberg at JHH just asking a question (not his pt) and he responded within a day, giving me much insight to this condition. I will certainly take a trip there if I am not satisfied with my treatment here.

I will say that I have researched many docs and thought Dr. Hain was the most interested/informed/educated on MAV…I read his website daily and decided to make the trip from Vegas to Chicago. At the end of the day, he told me what I already knew, and the med he prescribed, I wasn’t able to tolerate. What I’m trying to say is that you will get so educated by reading all the info on this site, that the best thing to do is find a doctor who lets you be a partner in your own health care, and respects what you know and feel, as it is YOUR body this is happening to.
That being said, I totally understand wanting to go to the “best”…and I hope whoever you find is also compassionate, and open minded. This disease has no rhyme or reason to it!!
Best to you,

[size=150]May 23-2011

Problem finding a good health professional re migraine related vertigo. Been to lots of doctors.
Johns Hopkins Hospital sounds like a good next step although involves a bit of travel I’m getting
really sick and tired of going here and there just because it is close and not getting any help.
So I’ll investigate Headache Clinic at Johns Hopkins next.

From Raven[/size]

Im in the dc area as well and have been to both hopkins and georgetown headache clinics. I have to say that i prefer georgetown as they seem more willing to “finetune” treatment to each patient. They also will follow you on an ongoing basis. I have a long hisory with johns hopkins and it is an excellent facility. The difference is that they tend to diagnose and prefer that you use your own primary care dr as followup. This makes it difficult with a disease like mav as there is not a one size fits alltreatment protocol. The number for te georgetown headache clinic is 202 444 8525. If you have any questions please post here or pm mee. Good luck!

Somene on this board was diagnosed with Multple Sclerosis at John Hopkins, unless I’m mistaken?
So always take the advice of “be your own health care advocate” with you wherever you go…no one cares like you care about yourself. These doctors go home to their families and their lives, and many times we go on to having side effects or just our usualy shitty symptoms, and if you aren’t a quick responder to their favorite med, it seems they lose interest. At least I’ve seen (and read on here) about many of these results…
Getting educated about this was the best thing I could have done for myself!!

Thanks everyone for your input -

I called Johns Hopkins today, and the receptionist told me that they are not taking any new patients until November…yeesh that’s a long while away.

I guess I am better off doing research on this topic myself and then presenting it to my dr.

One other thing - how do you get rid of the brain fog/someone sitting on your head feeling??

Im the one that was diagnosed at hopkins for ten years with ms… that diagnosis was changed to mav last year. Although i still have great respect for the hopkins drs, i have chosen the georgetown headsche center over hopkins and have been seen by both. My previous post gives the georgetown number. I know the wait is long, but my doctors wrte able to get me in sooner. Try that! Gooduck and im hsppy to answer any questions you may have…

I saw John Carey at Hopkins. I don’t know whether he’s involved with their headache clinic. He is a neurotologist, diagnosed my MAV, advised me re diet, prescribed for me, and sent me to this web site. (I live 1 mile outside DC.)

david- how long have you had MAV and are you still able to work?