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Old 04-13-2008, 05:52 AM
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mrsD mrsD is offline
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Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
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Quote:
Originally Posted by gislat View Post
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 The standard ranges used in this country are very outdated and LOW. 250 B12 can be "normal", but it is NOT normal for your body.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.
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Last edited by mrsD; 04-13-2008 at 08:09 AM. Reason: fixing spelling
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