MAYO Clinic: Anybody gone for PN?

KateKline · 08-19-2015, 04:44 PM

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.

Northerngal! Did you get answers......did you get help?!

baba222 · 08-20-2015, 08:55 PM

Quote:

Originally Posted by February

I'm sorry Baba.

Thank you.

We all deserve sympathy and support for our suffering.

Hope you get better.

northerngal · 08-20-2015, 09:01 PM

[QUOTE=Kitt;1164001]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.

[url]http://www.mayo.edu/research/faculty/dyck-peter-j-

I saw James Dyck when I was there---- Peter Dycks son.

northerngal · 08-20-2015, 09:14 PM

Quote:

Originally Posted by KateKline

Northerngal! Did you get answers......did you get help?!

My diagnosis was CIDP before I went there and Mayo dxed me "atypical cidp". they recommended a smaller amount of ivig at more frequent intervals (weekly). I was already on IVIG before I went.
I think if someone has no diagnosis at all, or is having trouble getting their own Dr to do a good work up then Mayo would be more beneficial to them.
For me personally, it didn't make a big difference in my treatment. My own Dr had already done the more important tests (emg/ncv and many labs).
The good thing is if someone wanted to get a lot of testing in one week and be done with it---the bad thing Mayo mainly likes to diagnose,and are not there for the follow up (unless you live there and they are your regular Dr.)
When myself and my doctor called back there several months later to get Dr Dycks opinion on rituxin for me, he refused to give an opinion over the phone. Said I needed to go back out to Mayo, even though my insurance company paid tons of money on testing and he had all my info right there.

bluesfan · 08-20-2015, 11:28 PM

Quote:

Originally Posted by Healthgirl

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.

Hi Healthgirl

If you are getting too much zinc (either through diet and/or supplementation) this can cause your copper levels to drop. The important test number is the zinc:copper ratio. It should be a ratio of around 0.7:1.0

Watch for hidden zinc in other supplements eg: multivitamins, combo supplements etc. The tolerable upper intake of zinc recommended by the NIH for an adult is 40mg of Elemental Zinc daily. Taking excess zinc over a long period can cause toxicity. Elemental zinc is the amount of actual zinc mineral in a compound eg zinc sulphate (many supplements only list the compounded amount so may not reflect the actual amount of Elemental Zinc.)

Sorry if this isn't very clear. Here's a link to the NIH website that has more info. You may also find other info about low copper by searching the site:

https://ods.od.nih.gov/factsheets/Zi...ofessional/#h2

Hope this helps and you get some answers soon.

Electron · 08-22-2015, 03:16 PM

My mother and I went in 2007. You can search this forum and my username and find more of what I wrote on several occasions. In summary, they confirmed that I likely have hereditary sensory neuropathy. They did not offer any hope of reversing it. They recommended exercise, which I agree is a very good idea.
Ron

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