For the past 8 years I have been given various dx: PN, Fibro, polymyalgia rheumatica. I am currently being treated for diabetes which I control via diet. But I am not taking any medications for the various neuro/rheumo conditions.

To date, I have gone to countless doctors, pain clinics, etc. and no one has given me a definite dx nor have I been given any drugs which have helped. I've had MRIs. EMGs, all sorts of tests with no definitive answers.

Six months ago my PCP sent my history to Mayo but they said they could not offer me an appointment. When I phoned Mayo's intake person, she indicated that my symptoms were of too longstanding duration and the neuros didn't feel they could do anything more for me. But I don't want to give up. I know that Mayo's comprehensive approach would at least give me more valuable info than I currently have.

I would be very grateful for any help in this quest. Thanks.

hi
I have copied this post over here from the New Member forum in the hope that someone can help

thanks, and again welcome to you antonina

Cheri

Could you give us a little history on yourself? It would help some of our "experts" in this disease to know how to guide you. All of us have histories and some of us have studied extensively the cause of the diseases we have. I myself suffer from Sjogren's Syndrome and Rheumatoid Arthritis. Both can cause neuropathy. Can you tell us some of the testing etc.

How did your PCP present your case to Mayo? Did he just tell them he'd like an appt. for you or did he give them complete medical history? Testing etc. It really makes a difference how the case is presented? Do you have a copy of his referral? Perhaps it should have been sent to the Rheumatology Dept instead of the Neurology. Or even to the Pain Clinic there?

Billye

be useful to provide again your thread of your own experiences in such a case.
That would be the best use to antonia at this point I believe. - j

Which one do you mean? I posted today the threads I did while doing the Mayo trip. (well, I thought I did, but can't find them now, so I seached again. The one where I was preparing http://neurotalk.psychcentral.com/sh...yo+appointment and the one during the trip. http://neurotalk.psychcentral.com/showthread.php?t=280 It took me some searching to find them. Was there another one you remember? That part of my memory is so sketchy because I was so ill. I'll be glad to post it if there was. I am guilty of coming here for help too much, because frankly, I have no where else to go. So when I seach, I find myself all over the place. I'll be glad to help more if I can.

Billye

I think you are helping,no worry..Yes Mayo has a Pain Clinic,that might
be the right direction..And it's always good to hear that someone dosen't
want to give up. My brother got me in ,he can do things on computers
I can't.. Sue

I am going there in a month, but I will admit it was not easy to get an appointment. Originally, my primary care doc contacted them trying to get me into neuro or rheumatology, and they said it would be six months if they could get me in at all. Desperate, I called the office of a former rheumatologist and begged for a letter of medical necessity, and he said whatever magic words rheumatologists say, and I was scheduled for December 3rd for Mayo's rheumatology department.

The impression I got was that a request from a specialist carries more weight, depending on the nature of what you need to be seen for. Do you have a current or at least recent rheumatologist or neurologist that would go to bat for you? There are probably other ways to get in, but I'm not familiar with them.

I understand your frustration. I've been sick since 1997 with Sjogren's syndrome, fibromyalgia and other ailments, but I've never before had the opportunity to get a comprehensive picture of the extent of autoimmune disease and/or neuropathy affecting me. I suspect there are many many people in a similar situation, and that may be why the Mayo Clinic is so selective about who they will take.

I'm very brain-fogged tonight, so I hope this made sense. There are many others here with more technical knowledge than I that can possibly help too.

fanfaire

The Mayo ain't the only game there is.
There's the Jack Miller Center, Cornell-Weill,
Johns Hopkins- to name just a few.

One of these respected centers will take your case, if you
have the right referral. Some may, on just your own request.

There's more than one way 'to skin a cat'!

A little background is in order. In late ’98, started to have stiffness & pain in my legs. Then couldn’t walk, climb stairs, etc. Go on bed rest because doc says I have Epstein-Barr. Don’t improve so I see a rheumo. Dx’d with Polymyalgia Rheumatica. Take prednisone & that helps with the stiffness but still cannot walk.

By Jan. ’99, dx with ovarian cancer. Have surgery & lots of toxic chemo. Walking gets so bad I need a wheelchair. I get a bit better and need only a walker which I still use 8 years later. Current situation: Legs, feet & hips extremely painful, weak & heavy. Numbness in feet, calves, hands. Balance totally goofy & fall over at the drop of a feather. Have tried: B12 sublingual & injections, neurontin, elavil, prednisone, Tylenol, onycontin, and many more too numerous to remember. Physical therapy has helped to a small degree. Currently only taking synthroid for hypothyroidism. No other drugs for whatever is the matter with me.

Fanfaire,
After the Mayo rejection, I asked my rheumatologist (who heads the dept. at the Hospital for Special Surgery) to intervene on my behalf and he insisted that I can get the same workup here in NYC. He is very kind and well-meaning, but he is mistaken. There is no such Mayo-like workup available in NY. If there were, I would have found it. The neuro I see has no particular “clout” and the doc who initially sent my records to Mayo was my oncologist who apparently also has no clout.

Right now it seems that my one other option is to go back to the rheumo to try to change his mind. I think getting a letter of “medical necessity” is a brilliant idea. It certainly can’t hurt.

Hopkins may be the other best place to try. (it's certainly more reachable for me) If I don't get into Mayo, that will be my next target. I've been to Cornell-Weill with not much success. As for Jack Miller, I've heard very good things about their PN program and that's another place to keep in mind.

Would you share your experience with Hopkins? Do you have any recommendations re: good neuros, rheumos, etc.? Thanks for your thoughts.