I tried scheduling an apt at Scottsdale Mayo in July and they finally called me in February to see a neuro there. I had become so tired of waiting that I began with another Scottsdale neurologist and have decided to give her a fair try before I go to Mayo, so I cancelled and postponed until summer. Their insurance is really bizarre as I'm on medicare with AARP supplement and still may have to pay some overages on allotted charges. Tom

Glenn ,
Do you have PN,and yes most neuro's are a bit odd,we have all mentioned
that in one way or other. You live in a great area,have a friend who was
a GP there.

If you liked Barrow why didn't you stay there? I just wish you could tell
us a little more about your problems and some of test you given..I'm
glad you brought this up.Being a Physician doesn't always mean you
will get better care.After being a nurse for 25 years,I've seen it go
both ways. I not sure but didn't you have more of a pain problem
in you spine? Nobody here would want to see anybody in pain.
I wish you luck. Sue

Sue,

I have had symptoms for over 20 years. They have been mostly mutifocal burning dysesthesias with some paresthesias and other neuropathic goodies thrown in. My neuro exams have been normal. I think the stress of having two foot operations in one month(10/07) really flared things up again, in terms of bad burning pains. The symptoms have waxed and waned. My Barrow doc feels it is a variant of small fiber neuropathy.....though I do not have any deficits. As many in the groups with this know the skin biopsy is a new quick diagnostic tool for this. There are also the expensive autonomic and sensory tests. Currently the Barrow does not offer these. In terms of the skin test my neurologist feels it has to be done by a good lab. He recommends only the labs at Mayo and Barnes in St Louis......thus the Mayo appt for another opinion.

Unfortunately Mayo in Scottsdale does not offer the skin biopsy...only the other expensive tests. I have had the million dollar blood workup in terms of all the diseases with small involvement such as diabetes. I feel better now and did not want the out of pocket costs with the Mayo tests. They would probably tell me... idiopathic small fiber disease.....no cure anyway.

Barrow has a new peripheral nerve attending who trained at Mayo Mn. Maybe he we set up the biopsy and other tests. Sorry for the long post.

Glenn

I would wonder if as an anesthesiologist...how much nitrous oxide you have been exposed to in the past 20 years? This is a huge risk factor for B12 metabolic failure.

What does one expect from the Mayo experience? A better diagnosis? ANY diagnosis? So you have small fiber...what will that tell you to do?

PN can be
hereditary
toxin induced (alcohol, occupational exposures)
drug induced (chemo, statins, HIV drugs, etc)
Chemically induced (solvents, nitrous oxide, etc)
nutritionally induced (low B12, and low thiamine, gluten intolerance)
autoimmune induced
rare disease connected (amyloidosis)
disease induced (hypothyroidism, prediabetes, paraneoplastic situations)

What is Mayo going to do for you that your own doctor cannot? Since you are a doctor yourself, you can get tests more easily than others posting here.

There is no miracle cure you know. The majority of the task is finding the correct diagnosis, for sometimes one CAN heal. However, the doctors will not offer healing to you...only drugs to suppress symptoms. Since Mayo Az....failed you, now you must take your own
case in hand and do it yourself. Like many of us here.

What kind of surgery did you have on your feet? I would start there.
But since you have had symptoms for 20 yrs? Thyroid, prediabetes, and occupational drug exposure should be your first stops, I would think.
Next up would be gluten intolerance/ B12 and MMA tests.

PN is a vast wasteland of wasted time, pain, and doctors who seem to not care much. When this happens people need to turn to support and other methods to find their answers. That is why there is an internet now.

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