My B12 and MMA are normal. I have not used nitrous oxide for years since it increases nausea and vomiting and possibly intracranial pressure during neurosurgery.

I thought the Mayo AZ would be able to do the skin biopsy. They do not. I did find out a group at Good Samaritan in Phoenix offers it.

You are right for an idiopathic cause of a disease, there is only symptom management.

I felt like a cog on a wheel at Mayo whose sole purpose was to make money for them via testing and large copays.

I have studied at some very good places including Northwestern University and Columbia University and did not see this atmosphere.

Glenn

What's "normal"? The standard ranges used in this country are very outdated and LOW. 250 B12 can be "normal", but it is NOT normal for your body. ( In Japan they treat anything lower than 500)

I think you are selling your body short. There ARE things you can try to heal yourself. Many here have made some strides in overcoming the discomforts of PN.

Firstly-- get an RX for Metanx.

Secondly...have testing for gluten intolerance/Celiac.


Those are the two biggies.

If you do not have markers for autoimmune disease, I assume you tested for that?, you don't need to consider IVIG at this time.

Twenty years of symptoms (mine started 30 yrs ago) suggests thyroid or hereditary CMT. Have you had good tests for those? My thyroid tested "normal" for years, yet I had a damaged gland that only showed up on technicium uptake(no antibodies). The hormone treatment lessened my symptoms about 80%.

This site has copies of papers on PN and gluten:
Including Celiac and PN by Norman Latov MD PhD and many other physicians who have experience with gluten.

http://jccglutenfree.googlepages.com/overviewarticles

Some drugs make PN worse or even cause it... ACE inhibitors(symptomatic burning), calcium channel blockers (symptomatic burning),
statins for cholesterol, Cipro and other fluroquinolones, metronidazole,
phenytoin, cisplatin, vincristine, HIV drugs, amiodarone, hydralazine,
Perhexiline, INH, dapsone, nitrofurantoin are some.

Occupational exposure is a potential for you...here is a dunning paper on dentists:
http://jada.ada.org/cgi/content/abstract/101/1/21

If you suspect a toxic cause then treatment with CoQ-10 and l-carnitine may help with any mitochondrial damage. These have been used for years by the AIDS communities, and l-carnitine is sometimes given prophylatically to people before chemo.

The MTHFR research is showing many people have errors in metabolism of the methylation chemistry in their bodies. This negatively impacts the nerves.
(and other things). The new vitamin mixture Metanx is designed to help people with these hidden errors. (there are 25 or so known mutations at this time).
http://www.metanx.com/
This would be the best vitamin mix you can use at this time.

If you are EFA deficient, you cannot maintain myelin repair. So depending on what you eat and don't eat, you may consider taking omega-3 fatty acids. And most assuredly avoid all trans fats (which are very damaging). Myelin is repaired thru the methylation chemistry but also must have fatty acids in the diet.

Much of medicine regarding PN, can be causitive. (drugs etc). And much of medicine ignores PN, except for dramatic presentations of autoimmune disease that can be treated with IVIG. Symptom control is poor, IMO at this time.

Other interventions involve thiamine and its newer better form benfotiamine, and R-lipoic acid. Some people respond well to GLA from evening primrose or borage oil. (these are found on diabetes papers).
example:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

So there are things you can do. PubMed offers many papers from around the world on this subject... that is where I go for answers.

Good Luck.

Glenn:

Sorry to hear your experience at the clinic was not good. Frankly, in my own personal experience, I have ended up with several neurologists, shall we say lacking in bedside manner. I do believe there is still hope for that specialty, as my current Neurologist seems to have passed that course with flying colors. Perhaps others become insensitive after doing numerous pain inflicting EMG/NC studies...

Anyway, about the skin testing. I believe Johns Hopkins has done quite a lot of work in this area. I spoke with someone in their neuromuscular lab, who told me that they could send the kit, then give a local doctor, or even a PA, about 5 minutes of instruction on the phone on how to take the necessary sample. The sample is then returned to them for diagnostics.

Are you comfortable in sharing what type of foot surgery you had?

Cathie

--that between this board and a number of others, I've read very mixed reviews about the Mayo clinic experience from a number of people. It's a very unscientific sample, of course, but it seems the people who went to the original clinic in Rochester MN had better experiences overall than those who went to AZ or FL--not sure why this should be.

On the other hand, I've heard far fewer bad reports from those who went to Cornell-Weill, Jack Miller in Chicago, or Hopkins; I suspect that at those places the neurology departments have more doctors/researchers intrested in peripheral nerve damage and more inquisitiveness into "unusual" cases.

Hi Yorkiemom,

The foot surgeries were cheiletomies on the great toes to clean up arthritis. The first two weeks after surgery were quite painful.

Glenn

Wow...that is one brutal surgery... I found PICTURES of it on the net!
Whatever process led you to that procedure, must still be going on, and causing trouble.

Once the feet are affected I think by ANYTHING, you have constant woe.
If this is where your pain is concentrated, you can try local solutions.
Compounded topical transdermal gels with ketorlac, ketamine, gabapentin, may help. People with RSD use them, but so do arthritics.
Also Lidoderm patches can be cut and creatively applied on your foot (I prefer the top of the foot for my pain/burning) for relief. I choose locations to interrupt signals, and find application to the exact site of pain is less effective.

I have broken sesamoids myself and am avoiding surgery. I know people who have had it and relief from removal is not good with that surgery. So when I flare due to some foot movements/mistakes I use patches and also the OTC Salonpas. I haven't tried the new patch Flector yet (diclofenac patch), since my Salonpas work well for me and are MUCH less expensive.

Burning in the foot can be temporarily blocked by high concentration menthol products. Biofreeze is what I was given, but there are others. The menthol selectively stimulates cold receptors and overrides the heat ones that are
firing too much.

Brian and I use high quality neodymium magnets for severe pain. I used one when I broke my toe (a big boulder crushed my toe while I was working in the garden). It had two breaks, and was badly bruised. Magnets block pain very well, IF you get the right type, a very strong one and apply them to the right place (over a nerve path). I did not find
shoe magnet inserts valuable at all (not strong enough). You need at least 5000 to 6000 gauss, and the ones I found were 10,000 gauss.

This is an example of EXPENSIVE:
http://www.buyamag.com/health_magnets.htm

This is AFFORDABLE...
http://www.magnetictherapymagnets.com/biomag.html

I don't like using them on the head, as they can cause dizziness if you have any ear problems.

One really strong magnet per foot applied over the nerve distribution to the toes will do it. (it does for me).
I use Micropore tape, and moleskin on the metalic side touching the skin.
My podiatrist suggested the moleskin (he uses magnets all the time) to prevent "magnet burn". And some people are allergic to nickel.
People laugh, but they do work. When you are in pain, you will try ANYTHING.

Topical solutions if you can get them to work, are the best IMO.

And if you have only mostly burning... please try Thiamine 200-300mg/day divided doses, or 150mg to 300mg of Benfotiamine. This intervention is very powerful for people with dehydrogenase failures, which are more common than many doctors think. Thiamine can be depleted by drug therapies (most antibiotics, diuretics, theophylline, digoxin) and use of alcohol and/or disufuram and/or Flagyl interfere with this metabolic system. Benfotiamine just came down in price and I have switched to it...with much better results than the old thiamine I was using. There are many papers now on PubMed showing improvements in PN with it.

Hi,

Thanks for the extensive replies MrsD!

Glenn1 mentioned some issues with the Mayo AZ. I live only three miles from it, so the trip was not a big deal. The Mayo AZ seems to be the smallest of the three. I think the hospital is only about 250 beds. Of course there are a lot fewer neurologists than at Rochester.

Glenn2

Sorry you had such a crummy experience. The only neurologist I have seen so far who even took me seriously was the one at Mayo, but it was at their main hospital in Rochester, Minnesota. In my case, I did need the expensive testing because no one else had bothered to look into my autonomic and other neuropathy symptoms other than a brief nerve conduction study.

I saw Dr. Joon Uhm, by the way. I think you can look him up on Mayo's website.

fanfaire