MAYO Clinic: Anybody gone for PN?
 

At end of my rope today as I know many of you are, especially the freshly stricken. Probably because of the 1 step forward, 2 steps back part of this. Yesterday had an hour or two where I felt halfway normal. Even went for a mild jog. Then oh boy did i pay for it last night and today with the buzzing, shooting pain, cold spots, and dizziness. Hard to accept that there hasn't been even a noticeable linear positive progression. Have been to 3 neuros, 2 infectious disease, done every diagnostic procedure (brain/cervical MR, autoimmune factors, vit and heavy metals, mold exposure, allergy testing, endoscopy, EMG etc) and absolutely nothing but for some mildly below range copper/ceruplasmin levels. I am 39 and can't accept that this level of pain and disability just came on all of a sudden, non-length dependent, with no explanation and is irreversible. I try to fight every day and it is so exhausting to get through it. Feel more impaired than some 90 year olds I see walking around and the most distressing is not being able to meet the energy of my 3 little kids, who I desperately want to enjoy for a day without being constantly reminded about pain, dizziness and all the other fun stuff that goes with this.

I was curious if anyone here has gone for a week to Mayo to see if a team of docs could try and look at the whole clinical picture from a number of angles. I know some folks with chronic rare diseases were able to get some clarity that way. I don't know. Am just trying to think of an action plan of any kind? Any docs that seem to have a handle on this condition and ways to treat? How about pain management ctrs that are terrific at least masking the symptoms (for now, i will even take that)

And Cana Girl, I do believe and will not accept this is as good as it gets. I believe it will get better no matter what is said and we will find all find a path forward towards a healthier, happier more pain free life. It just won't be easy.
SORRY FOR THE RANT!!!

On 900mg's neurontin/600mgs Magnesium/200 mgs minocycline/samento-banderol and grapefruit seed extract.

The Mayo Clinic in Rochester, MN is one of the very best. Hope you find the answer.

Kitt have you been? Do they basically have you stay a week and do a whole host of testing and then caucus across specialties to discuss and brainstorm your case? I am looking for some House MD magic here!!

Mayo...
 

My mother always said if you have nothing good to say, better not say it.

So, Mayo is very organized. Most of the staff and faculty are professional.

Now going against my raising:

There is still some bias and problems with lack of understanding at Mayo.
I have classic SFN symptoms and asked several times for a skin biopsy.

They did not do it, but did re-ordered the emg and nerve conduction tests and repeated almost all of my previous tests.

I spent weeks working on only bringing 100 pages of records (massive workups prior) to Rochester and the doctors did not even read them and made a show of skimming through them in a few minutes. My husband was incredulous.:eek:

The team did not meet, but said they read each others' findings. Did not seem that way by the way they responded to me and my husband.

I had the sweat test and it came back negative, so at that point, "I am believe that the patient's symptoms are not even neurological in nature. "

Summary: Spent thousands to be herded and give another skin disturbance and central sensitization diagnoses.

The Internist was nice, but deferred to the famous Neurologists.

If it weren't for the kind folks here, I would still be told that stress was causing my pain. Thank you friends on NeuroTalk!:)

Kept pushing and finally a non-Neurologist did the skin biopsy and my results were pronounced damage to sensory nerves.

After I was brave enough to tell my story to a select few in my personal life (due to not being believed prior), a few people told me that their experience was disappointing too with other medical conditions.

I felt deeply (FOR ME ONLY) that Mayo Clinic can be likened to the Wizard of Oz: "Follow the yellow brick road!"

Again, very efficient. Accustomed to diversity. Clean and organized.

Good luck with your decision and hope you get some answers soon.
:hug:

I went to MN. I had a diagnosis for 3 years and wanted another opinion because I wasn't feeling as well as I hoped I could. My main medical center is excellent also I should say. I asked to see an internist first, instead of a neurologist because I didn't want to pigeon hole a diagnosis. I knew I needed to see one but wanted to keep other options open as well.
I called without a referral from my doctors. They gave me a phone interview and said they'd let me know if they'd accept me. They called the following day and said they'd take me as soon as I could get there.
I met with the internal md and went over my history. We made a plan to meet with 3 specialist including a neurologist. I returned in a couple weeks and stayed 2 or 3 days to complete tests and consultations.
The entire experience was excellent. My diagnosis did not change and they really could not offer any more insight than I started out with but I would do it again in a heart beat.
I needed to know I have done everything possible to get well.
Go!

I have not been there but I know plenty of people who have. They are one of the best. That is the Mayo Clinic in Rochester, MN.

I'm sorry Baba.

I do think that they have to do their own testing.

Thanks Baba 222 that is basically what i had been afraid of. Feel like i have done every test imaginable but thought perhaps that having multiple docs consult they could look at things from a different, more holistic point of view and provide some more insights. Sounds like that may not really be the case which may have the effect of leaving me more depressed than going in.

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! :)

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

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.

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.

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. :confused:

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.

My two cents--
 

--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.

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

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.

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.

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.

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

Thank you.

We all deserve sympathy and support for our suffering.

Hope you get better.:hug:

[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.

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.

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.

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