The Mayo Clinic

[jumpinjiminy]

Has anyone been there for a diagnosis or workup? I'm wondering what the procedure and process is like. If anyone has traveled to Mayo for diagnosis, would you mind sharing?

I'm not even sure what specialists I would need to see at this point. How do they decide? Your doc sends your file, someone looks it over and they begin picking out specialists and tests to order?

Curious . . .

[wiggles94]

I have a friend who had great success with the Cleveland Clinic when she was going through a bout with very strange symptoms that were neurological, vascular, rhemy etc related - none of our local docs could figure it out but they were treating the symptoms.

  The docs at Cleveland clinic figured it out- they also helped her with her meds.  What the local docs had her on were actually making her sicker.  She swears by Cleveland clinic.

Good luck to you!

[Lulu54]

This week at one of the patient education presentations I was able to ask about Mayo, and how their standard of MS diagnosis is so much stricter than other centers in the US.

This neuro said that he feels Mayo has little to offer for MS - he said they are very good with Parkinson's disease but are definitely not leaders when it come to Multiple Sclerosis.

We have heard very few success stories here.  Most come away feeling that they have wasted time and money.  Even if your insurance covers the medical part you still have the expense of traveling and staying for several days.

The best of the Mayo satellite sites seems to be the one in Florida.

Is there a reason you are going to Mayo? There are other places we might recommend that could be closer to your home.

be well,
Lulu

[jumpinjiminy]

I forgot to mention I did see an MS specialist at one of the finest centers in Chicago. He felt that with 20+ years of symptoms waxing and waning and no MRI lesions, that the likelihood of MS was slim. He thinks it's something else.

I don't even know what type of specialist to see at this point. I have to schedule with an endocrinologist locally to rule out adrenal insufficiency - which I'm sure I don't have - fatigue maybe, but not insufficiency. I don't think they have a test for adrenal fatigue.

[jumpinjiminy]

My GP wants me to go. He thinks there is more going on than the CNS inflammation. There are signs of inflammation elsewhere, chronic remitting fever, thyroid antibodies, interstitial cystitis, history of costochondritis and raynauds, but no lupus antibodies are showing up on testing. I've also got low normal thyroid levels and cortisol, so maybe some autoimmune endocrine attacks as well as CNS. Local rheumatologist says no lupus.

Hashimoto's encephalopathy is a possibility, but not enough clinical evidence to diagnose and treat. Antibody levels aren't high enough to suspect it as the sole cause for CNS probs.

GP doesn't know what to test for beyond this. Neuro doesn't think anything will show up in spinal fluid b/c the big flare has passed. Yet the fever continues, my vision is blurring, and I'm still having trouble with heart rate variability, orthostatic hypotension, fatigue, etc.

We know it responds to steroids. So now I have to decide whether to try the spinal tap to see if anything shows up, or go to Mayo for a diagnosis, or just go ahead and treat it for a couple of months with steroids and see if I can get a long remission.

I'm confused and don't know which direction to go. I'm thinking of just going ahead and doing the steroids now. But after all this testing, they feel committed to finding a reason for the problems.

[Willowwoman777]

Truthfully, I've heard one of the best MS Clinics in the US is the Mellen Center at Cleveland Clinic. You might try checking out http://www.mscare.org
They list all the clinics available, etc. My neuro said the clinic at Cincinatti isn't that great but thinks Cleveland Clinic is really good. I've never heard of the Mayo Clinic being highly rated for MS, but more for heart desease.

[Sumanadevii]

Someone correct me if I am wrong but isn't it the Mayo Clinic that has it's own criteria for MS?  That alone would scare me off.

[HVAC]

I can't give an opinion on the Mayo. You might want to do a search on MS and the Mayo on the older posts. There is a joke around here "Hold the Mayo" . I have heard a lot of people were not impressed but again I am not speaking from experience. I am pretty sure you need a referral.

Alex