Some here on the board are not real pleased with the Mayo clinic. It seems they have their own set of standards to give out a dx of MS. I personally know nothing about them and wish you the best....hoping for that answer.
I'm in the same boat looking for a neurologist who doesn’t just go with their pet illness. I’m also considering going back to the Mayo. I went years ago when I barely had symptoms compared to now. They were helpful, but couldn’t pinpoint my problem. The best part of my visit was a full-day psych eval. I had had docs telling me for years that it was psychological. Well after a day of psych tests, I met with an ENTIRE PANEL of psychiatrists and they said that whatever I had was medical not psychological – that alone was worth the price!
Now that I have more test results and symptoms I think I might go back. I think the group approach is important. The next best things I’ve done are to get my DNA tested and to buy a ZEO machine. I kept telling my neuro that I was having bad side effects to the meds and that others didn’t work. I finally have the proof – my DNA shows that I have non-functioning enzymes for those meds. The drug-interaction info has been invaluable. (I used the company 23andMe.com)
I got the ZEO machine to prove to the sleep doc that I dream excessively and DON'T wake up at night. I've had 5 sleep studies, but I just can't sleep in a clinic - so he kept thinking my problem was lack of deep sleep rather than the excessive REM I have. The more I know, the more empowered I am.
Best of luck! (PS I posted a question a couple down from yours in the Neuro forum)
Wow, desertkris. I looked into that genetic testing and it's very interesting. I noticed also it's a Labcorp company. I'm hoping that means they have standards! And the ZEO machine looks great too. Thanks for those ideas. I've thought of meeting with a neuropsych to get that out of the way, also. It sounds like we have a lot in common, including the caffeine thing. I'm super sensitive to caffeine and have often wondered if I metabolize meds properly.
Thanks for the well wishes, Sumanadevii. I wouldn't expect an MS dx from Mayo for the simple fact I don't have MRI lesions anywhere. But if they have access to specialty testing, they might be able to gather more info. I'm still up in the air about the whole idea.
I've read somewhere else that people who were originally dx with MS and went on Copaxone had their brain lesions clear up, their dx revoked, went off the C and started having flare ups again. Now they're stuck without a dx or treatment. It all seems so cruel to me. Here we have people who were helped by a medication, then had it withdrawn because later MRI testing showed no brain lesions. I feel like we're living in the dark ages of medicine where someone decided arbitrarily that MRIs were the gold standard of detecting and monitoring these disease, yet so much remains inconsistent with the methods.
Copaxone has few side effects and obviously helped these folks. It would be nice to see some research branch out to try and treat undiagnosed or MRI lesion-free CIS/suspected MS with some of these agents. I suppose there is no money, or research interest in the mysteries of limboland, and so we all languish until the elusive lesions make themselves known. How many people go through this and end up secondary progressive before they've discovered it was MS all along? I so wish I had access to the data and could analyze it. :-P
I looked up my insurance co's position statement on Copaxone, and it requires CIS to be accompanied by MRI lesions for coverage. There you go. The stuff, even generic from Canada runs $900/month. There must be other neuro conditions out there that have myelin basic protein as an autoimmune target. It's been implicated in autism for one. But at this point, I'm beyond the CIS stage, having had four distinct attacks since last August.
Don't mind me, I'm just expounded tonight. We're in a much tighter position financially since I had to get a car with AC, and so have to be more choosy about where those medical dollars are allocated. But I may be able to hook up with an old friend in the Minneapolis/St. Paul area for a short visit which would cut down on the expense some. I'm so hesitant to pursue this through Mayo. Maybe my gut is trying to tell me something.