Thinking about going to Mayo (or somewhere else?)

[steph74]

I feel like MS has been effectively ruled out.  My most recent MRI was a 3T, brain, c-spine, and t-spine.  Nothing showed up.  I've done the neuro-psych route and have been "cleared" in that regard.  My MS doctor thinks my sx's are just like MS, but nothing's there on the MRI.

I honestly don't know what to do.  If I wasn't getting worse, I'd just live with it.  But I am getting worse and I need to find some answers.  I have three small children and I need to not get worse to be able to take care of them.

So I'm thinking about going to Mayo or somewhere else (CC?) where a team can work to figure out what's going on.  Has anyone had good luck with a "mystery diagnosis" at either of these places or somewhere else?  I really need to figure this out!  Any input would be helpful.

Stephanie

[steph74]

Thanks, Lulu.  You're right that Hopkins and NIH are both closer!  Also, my current doctor might have a recommendation for someone there.  She's very nice and seems to be a good neuro, but she's an MS neuro and at this point I think she's just going to say, "not MS."  I feel like I need a better answer than that, because "not MS" doesn't equal "nothing."  I'll post another question for rec's for one of those places.

Prettymomma--you should probably re-post this under a new heading so people will see it.  Good luck with your visit and let us know how it goes!

Stephanie

[Prettymomma]

Lulu,
Are you familiar with the Barrow Neurological Institute here in Phoenix? Have you heard anything good/bad about them? I ask this because as of tomorrow I am going to try to get treated by their doctors. My current Neurologist is garbage (for lack of a better word) and I need some serious help. I am currently very sick.

[Lulu54]

Steph,
We're not overly impressed (I'm being kind, here!) with the way MS patients are treated at Mayo.  

You're on the east coast - why not go to Maryland and see the doctors at the NIH or at Johns Hopkins?  Both have excellent reputations for handling hard to diagnose cases.

Sarahsmom (Julie) goes to NIH, and I believe our Ess is at JH,  Either of them could give you a recommendation or two.

good luck,
Lulu

And it seems to be a mixed bag at CC too.