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!!

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.

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.

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!