I was inpatient at St. Marys Hospital (doctors come from the Mayo Clinic,) back in 2002. Be prepared to be tested for everything under the sun, they are excellent at diagnosing, & ruling out every other possible disorder there is. I felt that they were rather conservative in regards to their treatment plans, had me on IVIG right away, but waited almost 2 months to add the solumedrol. My husband stayed at a cheap hotel called the RayMar, as he would walk over to the hospital every morning early & go back late at night.
We would certainly consider mayo. Have you guys ever done mayo and known someone who has? They believe that the Parvo b19 is triggering the cidp and is also triggering the arthritis. It is called reactive arthrits. It is such bad arthrits that it fits the criteria for Rheumatoid. Researchers have found that when they went in and randomly pulled people with RA out of a rheum practice and tested them for Parvo that some of them miraculously tested positive. I really feel like we are on to something here even if it does not help my daughter. I told the rhematologist that she may even have some children dx with rheu that are really parvo and she kind of stuttered and changed the subject. She did say that it is possible. For some reason i am really questioning the medical profession right now. We think that they are so advanced but there is so much more to be done. There is only one PHYSICIAN who knows all things and that is the GREAT PHYSICIAN. Out of ALL the doctors that selah has seen, he is the only one that caught the parvo.
Hello, My sister was diagnosed by the Dr’s at the Mayo clinic in Rochester. She had to bring her records but was there for 6 days. They did their own tests and she had to see their specialists. I did call them about getting an appointment but you must have a referral to see a neurologist there…no exceptions….just my 2 cents!
I have advice for you relative to insurance coverage at Mayo. I live in California, and went to Mayo Scottsdale AZ. Mayo Clinic charges premium rates for their services, and they do not discount them to insurance carriers who are out of their contract network. Therefore, my insurance company only covered about 20% of the Mayo bill, and I was left with the rest to pay, even though I was long past paying my decductible for the year.
For instance, Mayo billed about $700.00 for the initial consultation with the specialist. It was a very thorough, 1.5 hour visit, but it is more expensive.
I have no idea of this would be of concern to you, but I throw it out to you.
Check with your insurance company, or probably better yet, check with Mayo in advance to clarify your exact coverage, then you will have no surprises.
I guess technically I was at St. Mary’s Hospital, which is affiliated with the Mayo Clini. But all of my neurologists were from the Mayo Clinic. I was not all that impressed, as I saw mostly interns at the hospital, although I did see my main neuro at like 5:30 every morning. After having seen Dr. Gareth Parry at the U of M I would never go back yo the Mayo Clinic. They are very good at diagnosing, but very conservative at treatments, at least for CIDP.
The last neuro I saw there basically told me there was nothing more they could do for me & that the nerve destruction would just keep progressing & eventually I would die when it went into my diaphragm & lungs. It was Dr. Parry who put me on the cytoxan protcol & I really had no side effects. For me it was no different than the 44 IVIGs I had already sat through weekly.
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