Anyone Gone to Mayo? - Lupus Message Board

amkg · 10-03-2005, 11:09 PM

I've been advised to go to Mayo Clinic to get a more thorough evaluation and coordinated treatment plan. I've spoken firsthand to someone who has been twice after a year of frustration and run around at home; and she speaks very highly of the outcome. Apparently they get all specialists together on diagnosis and treatment and then advise your home physician of the outcome. Sounds like a great idea to me.

I've had chest and left arm pain for months now, getting progressively worse; and all I get is the run around. Despite the "rub" the rh said she heard; my latest tests apparently all came back "normal" so the nurse at my Rh's office seems to think I'm fine. (I had high ANA on my first test results at which point I was told "Lupus".)

I am NOT fine.

From what I've read "normal" test results are very common while on Plaquenil and before major organs are involved/damaged. I don't want to wait until major organs are involved to get a handle on managing this. I need to get a handle on it before I'm sicker than I am now.

I've got a list of about 20 consistent symptoms; but the chest pain has me the most concerned at the moment. Overall, dragging myself out of bed every morning is almost more than I can handle some days.

The Rhm has me on Plaquenil and Cymbalta, Tylenol and Aleve; the ENT has me on Allegra, and the GP has me taking Aldactazide only occasionally.

So has anyone been to Mayo?

pambyboo · 10-04-2005, 04:38 PM

I have not gone there for my lupus, but I did take my daughter there and had her treated for her uretal reflux. I HIGHLY recommend them. The are the most up-to-date on new and alternative treatments. They saved my daughter major surgery by enrolling her in a research study. They will get specialists from different areas involved, as well as running all tests on-site. You may have to stay up to a week, so be prepared. Overall, I've had nothing but positive experiences there. I have been thinking of going myself, as I am starting to have lung/heart involvements, but just haven't gotten up the motive. Let me know if you go!
Pambyboo

amkg · 10-04-2005, 11:45 PM

Thanks so much. I have heard nothing but positives.
I'm going to start looking into it as far as what my insurance covers, etc.
Then figure out what I can arrange.

It seems like it may be well worth it.

I'll report back what I find out!!!