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Old 12-31-2008, 09:49 AM
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mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
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15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb No magic bullet...

There is no one magic bullet to help all people with PN.

The one treatment that may help autoimmune PN is not even a drug, as we know it. It is a collection of globulins from other people, donors, injected into the patient. Sort of a "natural" treatment. IVIG

The most common cause of PN is diabetes statistically. This CAN be helped by lifestyle changes.

Other causes are toxins/poisons/and drugs. These may be temporary, and when withdrawn healing may occur.

Then there are the hereditary/genetic errors type. So far we have only one possible therapy for one specific hereditary type CMT still being researched...Vitamin C. No one at this time knows of ways to correct hereditary types of PN. Perhaps it will be stem cells in the future, or some other nutrient to fix the decay of mitochondria/respiration of the cells that are affected. Some enzyme perhaps.

So the bottom line? Doctors are way behind with PN as far as treatment. You may be offered plasmapharesis, if your doctor thinks you have Guillain-Barre viral infection. But it is not offered to any others with other triggers for PN.

But all the other drugs -- gabapentin, opiates, other pain relievers, Lyrica, etc are palliative. (for symptom relief only).
The way I look at it...is that when doctors have sophisticated and expensive I might add, drugs like these they don't look further to help the patient. Today you have to practically hit doctors over the head to get a B12 test or shot!
It is this attitude we should be looking at.

No one person on this forum has the same PN. We all have variants of damage that are unique to us.
And most of us are angry ...even if it is repressed to some extent. Why ME? We are also afraid....will we become totally disabled? Why are some so drastically affected and others not?

No one wants to hear medical information, that they caused their own cancer, for example. (even if it is true in some cases like smoking). And no one wants to hear that their lifestyle is "wrong" and must be changed. That side of the coin, the personal responsibility aspect, of illness is rejected by many people today. Slowly that is changing, but it is very difficult.
People still want that magic pill/bullet to fix them.

Dr. Weil is trying to get medical education changed, to include for new doctors courses in preventive medicine. His point of view is very valuable, and I hope he succeeds before he leaves this plane of ours.

People come here to see what is possible. They may reject some ideas, may try some ideas, may find some comfort by being with others who are in the same boat.
But remember WE ARE FREE of charge. You can take what you want and leave, no charge. Some people get better and do leave. I can recall many many over the last decade. I think I am the longest person posting (except for rose) here.

I am watching the research carefully. The diabetes problem is becoming epidemic. I am concerned that with all our knowledge the diabetes problem is not being solved well. The aggressive thinking by doctors in the ACCORD aggressive arm resulted in MORE death than was expected, and was closed.
That means to me that current thought is WRONG in how to address this problem. I am hopeful that genetic research will point to the culprit. Right now, I am looking at d-chiro inositol which I was looking at years ago. It is now available by two companies as a supplement for women with PCOS...who just happen to have pre-diabetes. It is very expensive, but I am starting a 3 month trial this week (long time coming via UPS--3 wks). I was discussing insulin resistance on this board (when it was at BT) in 2000!
It has been almost a decade and what we know about diabetes, insulin resistance has not changed, but at least this important form of inositol is now available. I am willing to become the guinea pig and try it myself. My fasting insulin was 34 last month! A very bad number! d-chiro inositol has lowered fasting insulin by 1/2 in women taking it in studies! That is only one example...and a major drug company is NOT making this into a drug--- YET. d-chiro inositol is made in our bodies from inositol. Something happens in diabetics to stop this conversion. So far studies show that providing the d-chiro form, reverses type II symptoms, lowers androgen levels (hirsutism) lowers fasting insulin levels and lowers elevated blood sugars...and that all of this restores ovarian function in infertile women.

This is only one example, of how managing pre-diabetes or diabetes type II may improve nerve functions. And it is a METABOLIC solution. Not a drug one.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

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Weezie looking at petunias 8.25.2017


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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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