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Old 10-22-2012, 02:37 PM #21
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Well, as far as the Red Yeast rice goes, it has the potential to cause the same effects as any statin, since it has statins in it.

So taking it is confusing. If it is weak enough it won't matter either for your PN or cholesterol. If it is a strong brand, you will still be taking a "statin" so you gain nothing in your trial to see if stopping statins will help you. In other words it is "confounding".

Many doctors only know superficial things about drugs. Things from the inserts which are limited, and very little post marketing information. They learn from drug reps mostly, and Xanax is no longer detailed.

I am sending you a link to explain more in detail about how the benzos can cause symptoms similar to PN.

Hair loss on the legs often comes with aging, and can also be connected to PN. Also from low thyroid. I've lost all the hair on my arms and thighs, but still have a little on my legs. I attribute this to my low thyroid for so many years.

The benzo problems have to due with causing hyperactive nerve responses over time (as the drugs wear off). It is subtle and only doctors familiar with addiction and withdrawal may understand it.

The effects of the CoQ-10 will not be immediate, but possibly by the first month of use is over.
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Old 10-23-2012, 06:35 AM #22
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Ron, if you decide to stop using your Xanax at bedtime, you ideally should taper off. I would do so slowly... because your body is used to this dose, esp if you have been on it a long time.

Discuss this with your doctor. But realize that some doctors may refuse a taper, or do one too fast.

Please post here after you discuss this with your doctor.
And also consult that Benzo site I gave you in the PM I sent.
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Old 10-23-2012, 08:17 AM #23
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I read on another site that someone who stated that he had CMT claims to have "cured" it with large does of vitamins E, C and CO-Q1O,

What do you folks think?
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Old 10-23-2012, 08:42 AM #24
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Not true. They have and are having trials all over the world on Ascorbic Acid (Vitamin C. Nothing has worked as far as that goes. We all would be cured if that were true. There is no treatment/cure at the present time for any type of CMT.

You can have side effects from too much Vitamin C. Those trials are very controlled and some people could not tolerate it at all.
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Old 10-23-2012, 08:42 AM #25
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Well, we don't know the details of what people often post on the net.

There are many variants of CMT. In the recent past it looked promising that high dose Vit C could help, but then when the trials happened, it was disappointing.

http://lpi.oregonstate.edu/ss06/charcotmarietooth.html
and
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154498/

Rodent studies don't always translate to humans. I recently saw a figure of about 60% only may apply to humans after rodent study successes.

There is no harm in trying them, however that I know of. You will want
to make sure your kidneys are working normally, however.

If you do the E, get natural and one with all the forms combined, including gamma. Natural ones typically end in --OL (tocoferOL)
and not --YL
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Old 10-23-2012, 08:54 AM #26
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Quote:
Originally Posted by RonJ View Post
I read on another site that someone who stated that he had CMT claims to have "cured" it with large does of vitamins E, C and CO-Q1O,

What do you folks think?
I do not know what curing it would involve. Did he claim to regrow wasted muscle tissue? This disease is highly idiosyncratic and is different for everyone, even in the same family. It can go into remission where nothing changes for a while, and then hit you with a sudden increase in pain and decrease in strength. I feel that everyone who makes outlandish claims of being "cured", or talks a lot about having CMT without any life-affecting symptoms reduces the credibility of those of us who are suffering pain and disability from the disease.
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Old 10-23-2012, 10:28 AM #27
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Yes, I agree. We never use the word "cure" here.

Depending on what is causing PN... the closest thing to a "cure" is for those who don't really have a true PN, but have paresthesias instead.
Paresthesias are symptoms of something else, and in certain cases when the primary problem is fixed, then the paresthesias go away.(the symptoms stop). It is a fine distinction, but it can happen. Hyperventilating or having acidosis from something can cause tingling in the periphery but it goes away when the situation changes and the hyperventilation is corrected. That is one example.

PN symptoms that come and go may be paresthesias. PN symptoms that remain constant probably are not.

Some doctors just tell patients things that are inaccurate. A doctor may just believe a person has CMT, and tell them that without further testing or family history investigation. If that were the case, one would have to realize it was not a real diagnosis.

In the opposite vein, I am becoming concerned about the news coming to light about the tainted methylprednisolone injections given as epidurals and joint injections, and their perhaps being a trigger for
nerve pain. The latest news suggests this was going on way before it was discovered... so people may be suffering from fungal infections in joints, or the spine for all we know, those who had epidurals, etc.
http://neurotalk.psychcentral.com/post924931-20.html
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Old 10-23-2012, 10:39 AM #28
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or its possible the person was misdiagnosed with cmt and never had it in the first place.
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Old 10-23-2012, 03:55 PM #29
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OK, thanks for the responses. Just thought that I would ask. I am new to this, and am, quite naturally, looking for anything that will help my condition.
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Old 10-23-2012, 05:35 PM #30
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Quote:
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OK, thanks for the responses. Just thought that I would ask. I am new to this, and am, quite naturally, looking for anything that will help my condition.
I didn't mean to sound unsupportive, but I see that I did. I have a tendency to be blunt. If you have a pretty firm diagnosis of CMT, you should follow all the protocols for any chronic illness, eat well, exercise as you are able, get enough rest, treat yourself well. There are many books out there on the subject of chronic illness and pain, and a lot of support on this forum and others. Our point is that CMT is not treatable or curable, and the only care is palliative, i.e. pain relief and mechanical helps such as canes, AFO's, etc. It is also progressive, and coming to terms with that is important. Not all outcomes are dire. Many people with CMT reach old age with symptoms similar to osteoarthritis, but others end up in wheelchairs at middle age, and some are crippled in childhood.

If there is still a possibility that something else is causing your symptoms, pursue that because it means treatment is a real option.
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