Hello,
Anyone willing to share experiences with Mayo?
We are thinking of going there.
Thank you.

Over the years there have been people who went there from this forum. Not many reported back any major improvements from that experience.

Type in Mayo into our search function on page one here, and read about it. There are 8 yrs of former posters who have posted about it.

The Mayo Clinic is a good place to go. At least for the many people from wherever who have or are still going there.

Do they ever do a full body scan on a person with neuropathy symptoms?

TIA

They will scan EVERYTHING, even if you just had a scan locally. Every test (that THEY feel necessary) will be repeated even thought they want you to bring your records.

I did get some diagnosis and help (but not the basis of my problems or much in the way of extent of neuro problems). I frankly wasn't impressed. They have an excellent "system" to get into appts (all day long) and their logistics is perfect. But if you don't have positive tests (and many with autoimmune disorders are sero-negative) clearly given them the answer, it will all be in your head. I have heard so many people say this...and I experienced it myself from one of their doctors, only to be properly diagnosed (with proof) at Johns Hopkins afterward.

Oh no, anyone can get the psych patient scenario locally. So sorry.

Is there more information on the autoimmune disorders in these threads?

Thank you for sharing your story.

I am currently being seen by Brain Rehabilitation clinic (it can take awhile to get in). I have an appointment tomorrow. They have a team and you have one person who is your main contact.

They will look at all of your paperwork and then order many tests. You then meet with the doctors and start focused rehab. I will post a link to the webpage but I will answer any questions you have. I live close by so it is easier for me to go.

I have them very helpful but nothing really can make the brain heal faster. If you are going to try and get in it might take awhile.

I guess I can't paste a link until I have more posts. You will have to google it.

--and this is just my own, somewhat unscientific, somewhat biased, formed-by-collection-of-anecdotes-from-many-people-over-the-years-opinion, there seems to have been more success for many at finding a diagnosis at some of the neuropathy specialty centers--Cornell Weill/Columbia Presbyterian, Jack Miller Center, Johns Hopkins, Massachusetts General, Jacksonville Shands--than at Mayo for many.

Mayo is a wonderful place for reasons aformentioned, but I think some of the facilities above may have somewhat more expertise, reseach-wise and clinically. into neuropathies. Johns Hopkins is where skin biopsy was invented, Cornell-Weill has done a lot of work on autoimmunity and neuropathy (particularly as regards monoclonal proteins, neural antibodies, and celiac), Jack Miller does a lot of research into amyloidosis, etc.