MAYO Clinic: Anybody gone for PN?

Kitt · 08-18-2015, 09:29 PM

Quote:

Originally Posted by madisongrrl

I feel like I have searched the archives in here and I've read a post(s) from Glenn about Mayo not being too big on performing the skin biopsy because they didn't invent it. He has also recommend that some of the specialized PN centers might be a better choice if you are looking for a cause for your neuropathy. Maybe search through some of the archives on this message board. There are some mixed opinions on this topic.

I do know that Mayo does perform the punch biopsy because people from another online SFN group have been diagnosed that way...so times must have changed or perhaps it depends on which doctor(s) is involved with your case.

Either way, I'm sorry that you are going through this. My symptoms came on very quickly on the week of my 38th birthday in 2014. My neuros's tried to hypothesize that mine came on with a virus......but I never had a known virus. In retrospect, I had symptoms several months to years beforehand that were likely mistaken for muscle-skeletal pain from being a high level athlete.

There are too many of us on this message board who are around the same age (30's & 40's) and we all have body wide symptoms that came on in a very upsetting way and have no known etiology; so here we are, sharing info and looking for answers. The good thing is that we have a good variety of skill sets on this message board and all bring different things to the table. If there is a group of people who are going to get to the bottom of this terrible idiopathic disease, it will be this group!

The Mayo Clinic has facilities in at least four states if not more. The one in Rochester, MN is of the best regardless.

en bloc · 08-18-2015, 09:32 PM

I have been...many years ago (1997). Honestly, I wasn't impressed. They have awesome logistics and testing, but the doctors are obnoxious...seriously! But the most notable thing about my visit was that if you don't fit in the specific criteria, then you won't get a Dx. They have no idea (and won't) look outside the box. And MANY people, not just me, report this.

I did get a Dx for two things, but the overall picture (of autoimmune disease) was not even considered. And they ended up being WRONG when after having seen them and they dismissed certain serious symptoms, I had 3 strokes, and then diagnosed by biopsy (at Johns Hopkins) with Sjogren's...which ended up being the CORRECT overall picture.

But as I say, their testing is top notch...it's just the end management of that testing that lacks.

If you have the option, go to Hopkins. just my two cents.

This being said, your low copper could be the culprit. It is known to cause neuropathy and it's very rare to be copper deficient in the US...even if you eat a poor diet.

I'd have this followed-up with both urine and serum testing.

franklin76 · 08-18-2015, 09:42 PM

Thanks madisongrl, en bloc.. En bloc - I got copper urine and serum and copper urine was very low 10 vs. norm of 20 and serum levels were in the high 50's or low 60's just below the norm. That said, oral copper replacement, after 1 month, didn't do anything to improve levels or symptoms, in fact I feel like I got much worse as a result so wasn't too sure what to do from that point forward. May need to re-test now that it has been about 1 month to see if that has improved or persists low. Just not sure how you replenish copper levels and why on earth this would be low and my neuro didnt know what to do next (even consulted a hepatologist who didn't know). I dont believe to have any of the hereditary syndromes such as Wilsons as then i would have had very high copper serum, not low.

KateKline · 08-18-2015, 10:07 PM

I called the Mayo in MN 2 weeks ago after being referred by my PCP. I was denied a consult with an internal med doc. ????? Talked to my PCP again....she called them back. She talked to someone that she said was very short with her. They said I could call and request an appt. with a neuro doc and that if anything else was going on with me, they couldn't gauratee I would be able to see anyone else. So, I am going to see a THIRD neuro doc here the first week of October. Not totally going to rule out Mayo yet, though.

northerngal · 08-18-2015, 10:22 PM

I spent a week at the Rochester Mayo as well. They are very good at organizing your week so you will fit numerous tests into the 1 week span.
I met with Dr. Dyck there for a neurologist for my first appointment of the week. We went over my history etc. I then spent the next several days doing numerous tests: emg/ncv, sweat test, tilt table test, pet scan. 24 hour urine, sural nerve biopsy, spinal tap, phy therapy, there were more, but I can't think of them off the top of my head. They also did a ton of lab work, most of which had already been done by my home neurologist.
Then at the end of the week you will meet back with your Dr. and he/she will go over all the test results with you and send you home with a thorough report and recommendations for your own neurologist.
There are many hotels near the hospital but they are pricey. I stayed at a budget place which I rented by the week---it was very inexpensive and had a small kitchenette. There was a Wal*mart nearby, so I just took a cab there and got food for the week.
There was a bus that ran routinely from the hotel to the hospital, so you had free transportation.
I flew into the small airport in Rochester that was not very far from the hospital and hotels.
Feel free to ask if you have any more questions.

glenntaj · 08-19-2015, 06:45 AM

--for what they're worth:

Mayo is extremely organized, and has expertise in a lot of conditions, but I have found the doctors there somewhat more limited in their understanding of neurologic conditions, especially peripheral, than perhaps they should be. This does not only come from the experiences many have reported on this board and others, but from my perusal of the literature (and I peruse A LOT).

I believe the best places for investigation into peripheral nerve problems are those with a stand alone specialty center backed by a major academic teaching hospital. Johns Hopkins is high on that list, as are Columbia/Cornell Weill Center in NYC, The Jack Miller Center in Chicago, Jacksonville Shands in Florida, Washington University hospital in St. Louis (creators of the best neurological database I know of, which I often refer to and can be found in our Useful Websites area), Massachusetts General in Boston, and the University of California/San Francisco medical center.

Kitt · 08-19-2015, 09:35 AM

Quote:

Originally Posted by northerngal

I spent a week at the Rochester Mayo as well. They are very good at organizing your week so you will fit numerous tests into the 1 week span.
I met with Dr. Dyck there for a neurologist for my first appointment of the week. We went over my history etc. I then spent the next several days doing numerous tests: emg/ncv, sweat test, tilt table test, pet scan. 24 hour urine, sural nerve biopsy, spinal tap, phy therapy, there were more, but I can't think of them off the top of my head. They also did a ton of lab work, most of which had already been done by my home neurologist.
Then at the end of the week you will meet back with your Dr. and he/she will go over all the test results with you and send you home with a thorough report and recommendations for your own neurologist.
There are many hotels near the hospital but they are pricey. I stayed at a budget place which I rented by the week---it was very inexpensive and had a small kitchenette. There was a Wal*mart nearby, so I just took a cab there and got food for the week.
There was a bus that ran routinely from the hotel to the hospital, so you had free transportation.
I flew into the small airport in Rochester that was not very far from the hospital and hotels.
Feel free to ask if you have any more questions.

Dr. Dyck is of the best. He is a Professor of Neurology and involved in all things pertaining to it. He is an authority concerning peripheral neuropathy for one.

http://www.mayo.edu/research/faculty...d/bio-00025843

Healthgirl · 08-19-2015, 10:23 AM

Quote:

Originally Posted by madisongrrl

I feel like I have searched the archives in here and I've read a post(s) from Glenn about Mayo not being too big on performing the skin biopsy because they didn't invent it. He has also recommended that some of the specialized PN centers might be a better choice if you are looking for a cause for your neuropathy. Maybe search through some of the archives on this message board. There are some mixed opinions on this topic.

I do know that Mayo does perform the punch biopsy because people from another online SFN group have been diagnosed that way...so times must have changed or perhaps it depends on which doctor(s) is involved with your case.

Either way, I'm sorry that you are going through this. My symptoms came on very quickly on the week of my 38th birthday in 2014. My neuros's tried to hypothesize that mine came on with a virus......but I never had a known virus. In retrospect, I had symptoms several months to years beforehand that were likely mistaken for muscle-skeletal pain from being a high level athlete.

There are too many of us on this message board who are around the same age (30's & 40's) and we all have body wide symptoms that came on in a very upsetting way and have no known etiology; so here we are, sharing info and looking for answers. The good thing is that we have a good variety of skill sets on this message board and all bring different things to the table. If there is a group of people who are going to get to the bottom of this terrible idiopathic disease, it will be this group!

I also think sometimes because of the heavy workouts and ashtanga yoga that I did for 10 years, I might not have recognized some neurological problems developing (mistaking flares as overuse injuries?). I don't know though, because I was really strong and worked out pretty hard... I never needed for than 3 days to recoup after a sciatica flare or whatever.
Even when the first noticeable symptoms kicked in I kept going till I literally couldn't even do one push up. It wasn't until then that I realized something is wrong and couldn't blame it on my workouts. I still wanted to, but it is 11 months since my first emergency room visit and I am still in miserable fragile condition.

Healthgirl · 08-19-2015, 10:50 AM

Quote:

Originally Posted by franklin76

Thanks madisongrl, en bloc.. En bloc - I got copper urine and serum and copper urine was very low 10 vs. norm of 20 and serum levels were in the high 50's or low 60's just below the norm. That said, oral copper replacement, after 1 month, didn't do anything to improve levels or symptoms, in fact I feel like I got much worse as a result so wasn't too sure what to do from that point forward. May need to re-test now that it has been about 1 month to see if that has improved or persists low. Just not sure how you replenish copper levels and why on earth this would be low and my neuro didnt know what to do next (even consulted a hepatologist who didn't know). I dont believe to have any of the hereditary syndromes such as Wilsons as then i would have had very high copper serum, not low.

Unless for some reason the copper is being absorbed into organs such as the liver- so would be undetectable in blood? IDK, I'm trying to figure out why I'm deficient also. I thought supplementing was making me worse at first too, so I was only taking 2 mg a day. I am now taking 4 and my numbers are finally in the very low normal range.

franklin76 · 08-19-2015, 11:18 AM

Healthgirl, that is good that your levels are better, maybe it will help some. I stopped all together but I will re-test in a bit to see if anything has gotten better on its own through diet etc.

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