Is a trip to Mayo or Cleveland Clinic worth it?
 

Hi:
I've had idiopathic PN for about 2 and one-half years. Is it worthwhile to get a full check up at a major clinic?
So far, my symptoms aren't severe--partial numbness in feet and hands, dryish mouth and eyes, acid reflux, occasional brief random shooting pains. My feet do hurt quite a bit when I am on them too long. I'm a teacher.
Tests did find mild nerve damage. But all of the other tests are negative.
Currently, I can dance, garden, bicycle and do whatever I want. Am on no medications except Prilosec and occasional aspirin or ibuprofen.
I am very lucky compared to many PN sufferers!!
My worry is that things keep gradually getting worse and I personally know some long term PN patients who are pretty much crippled by PN.
I feel like now is the time to do something. But my hunch is that I have something going on that is not going to be curable.
Is it worth it to go to a major clinic? Which one? I have good insurance.
I live in Wisconsin. Thanks! Stu

I would like to hear from anyone that's tried that route before as well. I live close (4 hrs) from cleveland and actual know one of the doctors (non neurological) and was going to ask his opinion.

Im undiagnosed and only 2.5 months in...

Well I went to Cleveland Clinic. When I went there though I had such extensive testing done before that when they looked over my results they felt there was no more testing to be done. I did see 2 pain/anestesologist doctors and took part of their pain clinic for a few days. I have mixed feelings on my treatment there. I do know people who have had better success. Sometimes at big places you feel like a # and it is rushed. The nice part though is often if you see lets say a neurologist and that doctor is concerned about something auto immune you can get into that doctor quick and they can work more together.
Mayo I sent my records too about 4 years ago. They can review them after and see if they feel you should come out. I remember from others on here they do more a whole approach where different specialties will look at your condition.
I hope you find the treatment you deserve and of course relief

Persojnally--
 

--I think the Jack Miller Center for Peripheral Neuropathy in Chicago might be a better bet than either Mayo or the Cleveland Clinic (and probably closer to you, too). It's a major center of neuropathy testing/diagnosis/research.

Hi, Stu and Welcome to NeuroTalk.

PN is complex... it requires some participation and desire for learning in order to deal with it.

Mine started when I was 30.

How long have you been on Prilosec? This drug blocks absorption of nutrients from the GI tract. Most significantly .. B12. So right off I think you need a test for B12 and also Vit D.
Get your numbers for both, and post them here to me. Don't accept "normal" as lab ranges in US are low and no longer accurate.

One has to be a detective when a puzzling thing like PN comes along.

You need to think back, to before you started having symptoms. What was going on with you then? Exposure to solvents? Toxins?

I do think bicycle riding is hard on the lower back and legs/feet.
I cannot do recumbant bikes anymore. Some people develop compressions from the stress of the seat, and repetitions of the feet and legs.

Have you had a complete exam from a podiatrist? To see if you have a structural problem in your feet? Sesamoid bone problems? Neuromas? Pronation, or tarsal tunnel signs?
Xrays of the feet? Compression may begin there, and once the nerves are activated, they will not typically quiet down on their own. Finding shoes that are more comfortable is a MUST!

Some drugs actually cause PN... some antibiotics and statins.
http://neurotalk.psychcentral.com/thread122889.html

Some nutrients and dietary changes may improve PN as well:
http://neurotalk.psychcentral.com/thread121683.html

Don't assume that a medication you took months ago or years ago was benign. Many drugs today are quite neurotoxic, and doctors don't know this or won't tell you.

Borderline diabetes, may not show up on some blood work, but the process may be in place and affecting nerves. A fasting INSULIN level will show if you are insulin resistant. Do you know your A1C level?

So sit back and read this forum for a while, and the subforum above it... where the informational posts are. They look at yourself and see what seems to be familiar for you.

Hello,
Not to sound negative, but no matter where you go your still gonna suffer from PN, the last Neuro I saw at the VA told me it was CIDP and I replied SOOOO. since taking amitripyline at night 10mg I sleep like a baby, also the Proscar has really helped the prostate issues. Still take 10mg Methadone in the am along with the baby asprin. To be blunt this forum has helped me more than "The Doctor will see you now"

For whatever it's worth, if I lived close enough to a good peripheral neuropathy center such as the one Dr. Smith suggested, would have gone to it.

But as I live in the Greater Cleveland area, my neuro is at the Cleveland Clinic. I'd give her a good grade, and the testing I had was not 100% but a lot of causes were tested for. Among the tests were a spinal tap and paraneoplastic panel that was sent to Mayo Clinic.

Sheltiemom

I PM'd you.

Often I feel it is less the hospital name and more the doctor you get. My best doctor was in my home town MI. I had a called a major teaching hospital which was suggested here. I explained my history a little and what I was looking for and they matched me with a doctor who I felt was way better then any I saw at Cleveland Clinic or UCLA for example. It is important regardless to get a doctor who deals with the specific condition you are facing. Otherwise mistakes happen.
To the OP do you have a major teaching hospital in your area?
Stagger though one may always have PN I do feel with proper treatment it can get better whether that mean from meds,treating the underlying condition,other treatments. It just takes time unfortunatly.

Thoracic outlet syndrome
 

Sounds like possible compression of the brachial plexus, a major neurovascular bundle that runs through a narrow space in the brachial region. If you have weakness in your group, specifically, the 4th and 5th digits of one or both hands, I would seek out a neurosurgeon familiar with Thoracic Outlet Syndrome. They can perform movements of your arm and test your grip strength to indicate possible compression. The only cure is to stop overhead activities and reaching with arms for the time being. If this does not relieve symptoms, physical therapy and/or surgery is most likely needed.

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Stuart
I went to the cleveland clinic after seeing a doctor at Ohio State Wexner center for several years. I was looking for answers for why I was having a range of SFN symptoms (I have now been diagnosed). The doctor was nice enough but he didn't have any new ideas for what could be done. He suggested a repeat skin biopsy among some other tests I had already had done in the columbus area. I was told by another doctor later that the Cleveland clinic is an excellent facility but not great at testing/treatment of neuropathies. They just had the same array of tests to offer. OSU actually has some of the more specialized tests including skin biopsy and QSART testing for SFN.
Hope this helps!

I flew out to the Rochester Mayo clinic and spent a week there. It was five days full of tests. I felt many of the tests were unnecessary, Extreme amounts of lab work was done that I had already had done, and really didn't need repeated. My diagnosis before all that testing "probable CIDP" my diagnosis after spending a week there, "atypical CIDP". Basically the recommendation from all the testing was to change my ivig regiman to smaller more frequent intervals----which made no difference.
After the new ivig treatment didn't work, my local neurologist called the Dr I saw at Mayo to ask his opinion regarding a different treatment. The Dr refused to give his opinion unless I flew back out there so he could see me again. This was after my insurance company paid extreme amounts of money for tons of testing.
In my opinion, if you are already working with a good neurologist who you feeling is testing you for an appropriate diagnosis then stay with him/her.The advantage to going to a place like mayo is they will schedule you for numerous tests in one week, and you will get it over with in a short time. The disadvantage, unless you live nearby and plan to stay with them, they really don't care what happens after you leave and don't follow your treatment. Their specialty is diagnosing, not treatment or follow up.

Hello Stu
 

I am not recommending any particular hospital. I went to small town GP and Endo but only after I went to large teaching hospital did I learn about the kinds of blood tests that are available. I was told to stop taking Zinc (how did I know that there is a copper-zinc ratio) I also learned that I had Amtotrophy plus Multifocal PN. IMHO if you have your ducks in a row and do what you can now, years later you won't be beating yourself over the head. I was a diabetic that was playing games with my Dr. and payed the price. An ounce of prevention is worth a pound of something or other. Good Luck, Ken in Texas.

My Idiopathic PN was misdiagnosed
 

I also live in Wisconsin. The Mayo Clinic Health System, where I live, misdiagnosed me as having "Idiopathic Peripheral Neuropathy". After going to a different health-system not connected to Mayo, a skin biopsy was done and I was found to have Small Fiber Neuropathy which is quite different than PN but does cause PN type symptoms. Have you had a skin biopsy done by a neurologist in order to, at the very least, rule out SFN?

[QUOTE=jobby99;1126351]Sounds like possible compression of the brachial plexus, a major neurovascular bundle that runs through a narrow space in the brachial region. If you have weakness in your group, specifically, the 4th and 5th digits of one or both hands, I would seek out a neurosurgeon familiar with Thoracic Outlet Syndrome. They can perform movements of your arm and test your grip strength to indicate possible compression. The only cure is to stop overhead activities and reaching with arms for the time being. If this does not relieve symptoms, physical therapy and/or surgery is most likely needed.

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Can you give more information on how the the brachial plexus could cause neuropathy in his feet? I am doing my own research on what is happening to me and I find this very interesting. I often feel convinced that my neuropathy is caused by injury in my neck and shoulders from years of too many pushups and plank pose. Not one doctor has yet to even think twice about it before they say no. I went to a spine surgeon and he said no way, but my first upper body symptoms were loss of coordination when playing guitar. Weakness in especially the pinky.

Welcome SFNnotPN. :Wave-Hello:

Though, to be fair to Mayo--
 

--small fiber neuropathy is merely a description of a type of neuropathy that preferentially affects the small, unmyelinated fibers that subsume the sensations of pain and temperature.

It is also the variety of neuropathy most likely to be diagnosed as idiopathic--autoimmune, toxic, and/or borderline glucose dysregulation are often suggested as causes but are hard to prove.

The problem may be that as far as I know, Mayo still does not do skin biopsies to document density and condition of those small fibers (which may have something to do with the fact that the procedure, norming, and protocols for skin biopsy were developed at Mayo's great rival, Johns Hopkins).

Mayo
 

I went to the Mayo Clinic in Rochester Mn. with all of the classic symptoms of SFN.

They ran a 1,001 tests and labs, including a skin biopsy, and said I have nerve pain. They said I can go the their pain clinic if needed.

I had to always push to see a neurologist, that was not an neurologist resident. The resident that I had was not very good at listening, caring or communicating, in fact I actually fired her near the end of my workup and went back to St. Paul. I then saw a great local neurologist that actually cared about me.

I would not go back or recommend them for a SFN evaluation.

Thanks

its hard for us to grasp the childish mentality involved in not doing a test that has become the definitive test for sfn, at the expense of the patients well being, because a rival institution developed it.