Need Resource for Diagnosis

[casio12]

Hi All,

I have several neurological symptoms including about 30 lesions on a brain MRI scan. I've gotten several diagnoses from different doctors including multiple sclerosis - but nothing definitive from the dozens of tests run. Can someone tell me who is considered the top doctor for DIAGNOSING  multiple sclerosis in the U.S. ?  I'm willing to travel to any state.

Thanks for any help you can give.

[casio12]

Hi Sarah,

I had 3 MRIs done over 6 months. The first one showed two small enhancements that were not visible on the last MRI that was done. No non-enhancing lesions disappeared over time and there are no new enhancements.

[SarahL2491]

were your lesions all found on the same MRI or separated in time and space on two different MRI's?

[casio12]

Thank you Laura, your info is very helpful. I have visited two MS specialists at well-know university hospitals in Chicago and they are stumped because my clinical and spinal tap results don't fit typical MS. However, most MRI reports to date suggest MS. I'm going to look into John Hopkins and maybe Dr. Corey-Bloom as I travel to LA frequently. Anyone you would suggest from John Hopkins?
I really appreciate you help!
Ann

[kwarendorf]

Hi Casio - Welcome to our little group :-)

As Lulu said, there really isn't one doc who is MS Doc Numero Uno. Give us a location, we could probably point you in the right direction though.

Kyle

[Lulu54]

Greetings. I'm not sure I would say there is one particular doctor in the US who is considered the top MS neuro in the country.  There probably isn't even an MS Clinic who can take top honors.  That said, there are some impressive doctors out there who are leaders in the field and they are scattered across the country -

The important thing is being seen by a neurologist who specializes in MS and doesn't do a lot of other neuro disorders - you can find the listing of those MS certified doctors through the Consortium for MS Centers  at
mscare.org

One thing we have found useful is to go to a clinic associated with a teaching university - most of those doctors are under less pressure to bring in income and have more time to spend with patients and staff to support their efforts than if they were in private practice. They also have access to better testing equipment.

If I were on the west coast, I would try to see Dr Corey-Bloom at the UC San Diego branch. I have seen several of her talks on line and just really like her common sense approach.

On the east coast I might try to get into Johns Hopkins

In the midwest, check out Cleveland Clinic or Ohio State (where I go). Avoid Mayo- they seem to have  different criteria  for diagnosing MS - but they are very efficient for their patients who travel to visit their clinic.

Good luck with this next step - being in limbo like this must be horrible and
I hope you can get answers, soon.
best, Laura