[savannah]

Latest diagnosis is patchy small fiber with minor abnormalities on sweat autonomic test. That still doesn't tell me what wrong with me, what is causing this , prognosis or treatment options or explain my exhaustion. So full body cat scan this week and if that's negative(hopefully) a referral to either Mayo or Hopkins. Get this my neuro wants me to go to Mayo but said its way to cold to go in the winter and I'd never get in before winter!
I'd rather go to Hopkins as I have a free place to stay and can drive there.
so is it really going to make a difference between these two options.?
Can't wait to learn what everyone thinks about these programs. My doc trained at Mayo so he is biased but then said they see 1000 people a month for PN. Hard to believe that. Maybe he meant to say a year but he then described the process and it sounded like a rat race with no option for stepping off their treadmill . I am very assertive about my care and will not do invasive procedures just because they want data for their research, I also can't take many drugs. I don't think Mayo will like my controlling my care so.................
Ideas?

[Leslie]

Originally Posted by savannah

Latest diagnosis is patchy small fiber with minor abnormalities on sweat autonomic test. That still doesn't tell me what wrong with me, what is causing this , prognosis or treatment options or explain my exhaustion. So full body cat scan this week and if that's negative(hopefully) a referral to either Mayo or Hopkins. Get this my neuro wants me to go to Mayo but said its way to cold to go in the winter and I'd never get in before winter!
I'd rather go to Hopkins as I have a free place to stay and can drive there.
so is it really going to make a difference between these two options.?
Can't wait to learn what everyone thinks about these programs. My doc trained at Mayo so he is biased but then said they see 1000 people a month for PN. Hard to believe that. Maybe he meant to say a year but he then described the process and it sounded like a rat race with no option for stepping off their treadmill . I am very assertive about my care and will not do invasive procedures just because they want data for their research, I also can't take many drugs. I don't think Mayo will like my controlling my care so.................
Ideas?

Savannah - I also have a refferal to Mayo and one from Hopkins. Mayo is rated at #1 and Hopkins #2 for treating neurological issues and my dr said go to the one that takes you in first.

I have found alot of useful info from the posts from silverlady who went to Mayo. Do a search on her threads and see what you can find out. Also, I know at least one other person who posts here who recommends Hopkins. This is a great site to get info from and I'm sure all who have any experience with either will be posting soon so please stand by.

[Zayne]

It was suggested by another doctor in my primary care office that I go to John Hopkins but I chose Mayo Clinic. My own doctor was against going anywhere saying they would not discover anything new. He was right. The doctor that suggested John Hopkins reasoned because John Hopkins tried new things was the right attitude I believe. Mayo Clinic was good that they search other things in my health problems but they really pushed for you comming back to see their pain management doctors. I just couldn't do that.

[glenntaj]

--but my sense is that despite the fact that Dr. Dyck, who wrote a well-known neuropathy textbook and published a number of important papers, works out of there, I'd pass up Mayo in favor of Hopkins if I had a choice, especially as regards small-fiber neuropathy.

This belief comes from accumulating the experiences of a number of people who went to either on this and other boards--Mayo does not do skin biopsy for small-fiber intraepidermal nerve fiber measurement (the current regime there doesn't seem to believe in it) whereas Hopkins pioneered the procedure (many of the names on the original papers about it from the 90's are Hopkins docs), and I do get the impression that the neuros there are more interested in expanding the boundaries of the knowledge about this particular type of neuropathy, examining the gluten, vasculitic, and nerve autoantibody angles.

Both Mayo and Hopkins seem to do a good job coordinating with other medical specialists and bringing them in to the investigation, as do Massachusetts General in Boston, the Jack Miller Center in Chicago, and the Cornell-Weill Center in NYC.

[savannah]

Thanks, great response. I have had skin biopsy and the neuro who ordered it diagnosed small fiber neuropathy from the results. However since then I have seen a doctor trained at Mayo who didn't think much of the skin biopsy. So it fits with what all of you are saying.
It would be so much easier for me to go to Hopkins but since I'm feeling so sick its most important to go to a good program.
Good idea about getting referral to both but I called Hopkins and I think I can self refer.
Love to hear from others anout their experiences at these centers.

[Silverlady]

This will probably be a biased mix based on personal opinion and treatment at both hospitals. My treatment at Mayo could not have been better. The only thing missing is the skin biopsy. The neuro there (Dr. Dyck) told me that he didn't want to do the sural nerve biopsy unless it was absolutely necessary. It wasn't. But I didn't get a skin biopsy. As it turned out it would have not done any good. I have rheumatoid arthritis and Sjogren's Syndrome. There is no cure for rheumatoid arthritis, only treatment. And there is really no treatment for Sjogren's Syndrome. A skin biopsy would not have made any difference in my treatment.

Mayo in Dec is horribly horribly cold. 14 below zero the day we got to Mayo. I really suffered from it. But Mayo is a teaching hospital and they start shutting down for the holidays early and not taking any new appts. I was told they could not see me at first and then a doctor whom I am friends with managed to say the magic words that got me in. Would I do it again? I probably would go just because we finally got the proof that will get thru whatever insurance loops I need to jump.

They did not miss any holes in my testing and it took all of it in order to put the story together. They also found an ulcer we did not know I had and put together a diet that kept me from starving to death.

The opinions you are going to get on the question you asked, are going to be very personalized. Would I do it again. I'm not sure. There is now a doctor specializing in autoimmune neurological disease at Hopkin. Now if I was able, I'd probably go to Hopkins. And I highly respect Glenntaj's opinion.

Mayo is considered #1 in the world, but Hopkins has an excellent reputation also. I'd go to the one who gave me the first appt. in my opinion.

Good luck,
Please keep us posted,
Billye

[dahlek]

some things to consider...
First off: Access and your possible insurance coverage...ergo Hopkins mite be rite for you. As far as 'small fiber PN's and other med issues that aggravate PN's are concerned they have a crew of docs working on it all practicing medicine as well as research.
SHOULD your current neuro be soo biased about such an 'outside opinion'? Then he definitely has a closed mind about the plethora of possibilities.
Second: Mayo and Hopkins are 1-2 in the neuro field today. Overall it's Hopkins/Mayo currently 1-2 overall. They trade places yearly and have done so for the last 5-6 years. Sooo, I'd nudge your neuro into giving you the 'Hopkins' blessing and try there. They also as Glenn, Silverlady and Zane said are valid in your choosing. One thing I perceive about Hopkins is that they tend to be more agressive about diagnosing and prescribing treatments for autoimmune issues should they be found. They are also leaders in this aspect of medical research regarding neuropathies...Mayo has been lagging of late in this regard[IMHO]. Wish I could read papers to prove me wrong?
Well, that's it for this?
I don't know about you, but YES, having a NAME put on my pain helps. The cause may never be determined, but finding out what ALL is wrong and addressing it in the best, safest possible ways is key to trying to get any part of a life back. Diagnosis and treatment are keys to that life and believe me, it's more important than a cause! Good luck and 's - j

[Fran E]

This is all very interesting. I am from Canada and have been wondering whether I should go to Mayo (or Hopkins) as well..... I have seen all the specialists here and am kind of at the end of the road. Of course it has all been free so that is great but I still don't know what I have except for peripheral neuropathy that is probably autoimmune related, so free only goes so far! I wonder if I need my dr to refer me or if I can just go......

Originally Posted by dahlek

some things to consider...
First off: Access and your possible insurance coverage...ergo Hopkins mite be rite for you. As far as 'small fiber PN's and other med issues that aggravate PN's are concerned they have a crew of docs working on it all practicing medicine as well as research.
SHOULD your current neuro be soo biased about such an 'outside opinion'? Then he definitely has a closed mind about the plethora of possibilities.
Second: Mayo and Hopkins are 1-2 in the neuro field today. Overall it's Hopkins/Mayo currently 1-2 overall. They trade places yearly and have done so for the last 5-6 years. Sooo, I'd nudge your neuro into giving you the 'Hopkins' blessing and try there. They also as Glenn, Silverlady and Zane said are valid in your choosing. One thing I perceive about Hopkins is that they tend to be more agressive about diagnosing and prescribing treatments for autoimmune issues should they be found. They are also leaders in this aspect of medical research regarding neuropathies...Mayo has been lagging of late in this regard[IMHO]. Wish I could read papers to prove me wrong?
Well, that's it for this?
I don't know about you, but YES, having a NAME put on my pain helps. The cause may never be determined, but finding out what ALL is wrong and addressing it in the best, safest possible ways is key to trying to get any part of a life back. Diagnosis and treatment are keys to that life and believe me, it's more important than a cause! Good luck and 's - j

[Leslie]

Originally Posted by savannah

Thanks, great response. I have had skin biopsy and the neuro who ordered it diagnosed small fiber neuropathy from the results. However since then I have seen a doctor trained at Mayo who didn't think much of the skin biopsy. So it fits with what all of you are saying.
It would be so much easier for me to go to Hopkins but since I'm feeling so sick its most important to go to a good program.
Good idea about getting referral to both but I called Hopkins and I think I can self refer.
Love to hear from others anout their experiences at these centers.

That's good to know about the self referral at Hopkins....I thought I read somewhere that you had to have a drs referral. If that'ss the case, I'll self refer right away. I'm anxious to get this show on the road....

[jsrail]

One of my original neuro docs referred me to Mayo here in Scottsdale. I went there regarding my other neuro issues and mentioned that a prior neuro doc and thought I may have SFN. The mayo doc (or resident rather, you don't see a regular doc) had them give me an EMG on one leg and said it showed no nueropathy and left it at that. Mayo is really good at ordering a million tests but really bad on communication. If a test doen't show something they tell you its in your head. I went back to the original neuro doc I was seeing about my hands and feet and he did an examination and with prior test results, said flatly that I had SFN. he is with the Barrows Institute here in Phoenix which is highly regarded in he neuro fields. I should have gone there first. And also, Mayo was not a preferred provider, so they racked up $20K in testing fees! Vheck with your insurance first!

I would never recommend Mayo around here to anyone.