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Old 10-09-2010, 12:33 PM #11
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Mine is idopathic, which is annoying to say the least. A doc at Johns Hopkins told me that the paralytic drugs that were used in the 80s have been linked to polyneuropathy. I spent 5 days in a coma in 1980 but no symptoms for 28 years is a little bit of a strech.
Many toxic neuropathies (including drugs), resolve when the drug is removed.

It is far more statistically likely that the drugs you take now (or in the very recent past) are culprits. The list of drugs that cause PN used TODAY is becoming longer and longer. Some drugs taken for long periods of time, years, permanently damage nerves. Others like fluoroquinolones can damage quickly. Millions of people have taken Cipro and Levaquin since they came on the market alone. There are websites devoted to these all over the web.
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Old 10-09-2010, 02:41 PM #12
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i am officially ideopathic although i know it has a toxic cause due to exposure to numerous toxic substances(not medicines) nine years ago. By the time i realized what i had was PN it was really too late to test for those substances.

Tulips i have sensory motor PN also and i also get fasciculation in my leg muscles often. I also get muscle jerks in my arms and legs. The strength in my legs and arms has not diminshed that much. I also get severe cramps if i dont keep up with taking magnesium or drinking enough water. My toes will also cramp if i contract them. My feet are pretty much dead numb now with numbness going above my knees. At the same time though when i stand or walk it feels like i am walking on broken bones.
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Old 10-09-2010, 02:53 PM #13
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If neuropathy is caused by meds can it ever heal.

I think mine could be autoimmune or hereditary since sister with ms plus my history of allergies and eczema.

If skin biopsy is normal does that mean I don't have sfn or does it mean there isn't damage yet?
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Old 10-09-2010, 03:05 PM #14
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If neuropathy is caused by meds can it ever heal.

I think mine could be autoimmune or hereditary since sister with ms plus my history of allergies and eczema.

If skin biopsy is normal does that mean I don't have sfn or does it mean there isn't damage yet?
Your first question:
Some drugs (HIV drugs and chemo) do recover if the patients use acetyl carnitine. These two families of drugs cause PN.
I have not seen studies on healing PN from Statins. (some people who come on these boards, have improved, others not.)
Drugs like Flagyl, some posters here are not showing improvements. Fluoroquinolones I have posted anecdotal information on my Subforum thread.
I have seen reports of improving alcoholic induced neuropathies with B vitamins, and diabetics are in the studies currently using
alpha lipoic acid and acetyl carnitine and benfotiamine (a form of B1).

Your skin biopsy results only shows a window of time when the biopsy is taken. It does not show what you had before, or what the future holds. The results are averages just like for blood testing. It will give an idea, but nothing definite.

I think you need to start that gluten free diet while you wait for results. If your culprit is gluten, you can see small improvements within a month.

You absolutely must read more and study up. Much of what you can do will have to come from YOU, and not doctors.
Check out the stickies on our Gluten forum for excellent links to help you. There have been many people here over the years with gluten induced neuropathies who have improved and moved on to the gluten free communities on the web.
There have been a handful of misdiagnosed MS patients too.

This site has a special section on gluten intolerance inducing neuropathy:
http://sites.google.com/site/jccglutenfree/
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Old 10-09-2010, 04:25 PM #15
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Thank you mrs D

A lot of this stuff goes over my head. Any case will read on. Most of every test I researched and demanded. They were about to do a genetic pod test for different ones that Athena offers an that when I lost my insurance!

I am going to get the glucose tolerance done next week. Will be paying out of pocket. Hopefully wont be too expensive.

You know every where I read it says that when doing skin biopsy for neuropathy two or three spots of skin are taken from different parts of leg but my doc only took one spot on my ankle.

I tried gluten free when I did the detox nutritional stuff for 21 days and didn't see any difference and gave up but I have realized that's not enough time.

Plus the natrual medicine doctor did body impedance test. Never heard of this before. He put electrodes like EKG and recorded results. To tell me if I continue this way my healing level is down!! What ever that means

Thanku
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Old 10-09-2010, 05:52 PM #16
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Quote:
Originally Posted by lynn01 View Post
Sometimes cramps in the feet, my toes will cramp sometimes and look distorted. not really twitching of muscles. My legs feel like rubber at times, it's just not a normal feeling and my left knee feels floppy and my ankles feel weak. I have mild tingling and numbness in the feet and occasional sensations about midway up the calf.
I get cramps also. Usually the feet or sometimes the calves. I also have the "strange" feeling in both legs along with tingling and numbness. The tingling can get intense enough that it hurts or sometimes burning.
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Old 10-09-2010, 06:22 PM #17
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Thank you mrs D

A lot of this stuff goes over my head. Any case will read on. Most of every test I researched and demanded. They were about to do a genetic pod test for different ones that Athena offers an that when I lost my insurance!

I am going to get the glucose tolerance done next week. Will be paying out of pocket. Hopefully wont be too expensive.

You know every where I read it says that when doing skin biopsy for neuropathy two or three spots of skin are taken from different parts of leg but my doc only took one spot on my ankle.

I tried gluten free when I did the detox nutritional stuff for 21 days and didn't see any difference and gave up but I have realized that's not enough time.

Plus the natrual medicine doctor did body impedance test. Never heard of this before. He put electrodes like EKG and recorded results. To tell me if I continue this way my healing level is down!! What ever that means

Thanku
Most doctors only look for elevated glucose readings. But in fact low readings precede the high ones. Low ones are hypoglycemic and are implicated in PN generation too.
Another more accurate way to evaluate your sugar metabolism is to do a fasting INSULIN level before you drink the glucose test solution. Elevated insulin levels indicate hypoglycemia, and insulin resistance.
Here are some graphs to illustrate the various results that can come up. Most doctors (unless endocrinologists looking for hypo readings), do not even consider low readings.
http://lightning.prohosting.com/~hyp...20Hypoglycemia

Your GTT should be at least 3 hrs long or more to show these dips accurately. A 2hr will not provide this information.
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Old 10-11-2010, 05:23 AM #18
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For myself I don't know the why. I have been so diagnosticly tested and seen so many specialties and many opinions. I may never know the why. I have tried to accept that and work on way to have a better quality of life through treatment. I do feel if I knew the why it would be easier to treat and manage of course
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Old 10-11-2010, 07:24 AM #19
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Mine is directly related to an autoimmune gluten intolerance. By the time we finally figured out gluten was the issue, unlike some, my neuropathy did not repair itself..I still am dealing with vitamin and mineral deficiencies after 10 yrs of gluten free.

Mine is sensory/small fiber neuropathy.
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Old 10-11-2010, 07:14 PM #20
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Supposedly autoimmune, Sjogren like Syndrome, with most systems affected, that said, I had restless leg as a kid....so, not convinced that something isn't hereditary as well. I got all the bad genes, except for my looks and brains (just kidding ).
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