Has anyone diagnosed with CMT had rellief from their synptoms after stopping taking a statin, such as Simvastatin?

I have been on a statin for several years now, have needed a few stents implanted, and have receently been diagnosed with PN, most likely CMT.

I previously posted my symptoms

I would go off the statins only if there is a realistic possibility that they are the cause, or at least a possible contributing cause of my PN.

You have to have a genetic test to see if you have CMT.

There are drugs that will trigger CMT in people. Recently there was a paper about Levaquin triggering a patient who was genetically positive for CMT but hadn't expressed symptoms yet.

Since many people don't get the genetic testing done, for whatever reason, including its high cost, data is not available on this question.

However, we know today that statins cause neuropathy in some people. (along with alot of other serious side effects).

It is something to discuss with your doctor. You may have to go off them for 6mos to a year to see any change. There may be no change if the damage is already done. Alot depends on how long you took the statin and at what dose.

Kitt and Susanne C post regularly about their CMT. But we have had few others with a definitive diagnosis of it here, inspite of the large numbers of posters and visitors over the years. Many CMTers begin in childhood, and that may be one reason.

The use of statins can cause muscle weakness in anyone not just someone who has CMT. More muscle weakness is the last thing a CMTer needs. This would be something to discuss with your doctor. There are other things to try when one has high cholesterol including diet, etc. High cholesterol can also be inherited.

I know a few people in the general population (non CMTers) who have taken statins and have muscle weakness.

Personally, my cholesterol is fine. I would never take a statin if it was not. I would do other things such as diet, etc. That's just me.

Here is the Wiki on Charcot Marie Tooth:

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

If you Google this term and hit images along the left, you can see photos of people with this genetic problem.

Muscle atrophy can be pronounced with it, as the photos show.

They are not a cause of CMT, nor is going off them likely to eliminate all or most of your symptoms. I can tell you my experience, though.

About four years ago I was put on Tricor for high triglycerides, over 500, by my primary doctor. I was also in the process of being diagnosed with CMT. My balance had become so bad that I tripped even with a cane. I had severe pains in my legs, in addition to the loss of sensation and burning that accompanies small fiber neuropathy. My neurologist suggested in a round about way that I go off the Tricor, which I did.

My symptoms improved dramatically, especially my balance and the leg pain. I still had the loss of sensation, the burning feeling, and the tightness, as well as the muscle wastage. Four years later the pain in my legs is worse than it was then with the Tricor, but that is the disease process. My balance has never gotten as bad as it was then.

You may experience some improvement in symptoms if you discontinue the statins, but I do not believe it will affect the underlying disease process, which is always progressive.

I was able to achieve much the same decrease in my triglycerides by taking fish oil, walking every day, and losing some weight. Only you and your doctor can decide how necessary the meds are in your case.

From one of your other posts you said you had foot drop that was caused by a compressed nerve next in your leg next to your knee and it was taken care of via surgery.

http://neurotalk.psychcentral.com/sh...861#post923861

If you indeed have CMT, that would not be the case. AFO's help CMTers who have foot drop. You should see a neurologist who can help you as far as genetic testing which would tell you if you do indeed have a form of CMT that they now can test for. The testing is very expensive if they have to do the full panel of tests.

Also, here is a medications list for people who do have CMT.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

As you can tell there is an uncertain or minor risk for a CMTer. There can be muscle weakness from a statin as the general population also can experience. I know of a few of those people.

With all due respect to that list at the CMT site...

I think it is out of date... Just like the B12 info is still out of date and can be found out of date on many sites.

It takes a LONG time to move medical minds. Once made up it takes ANOTHER long time to move them from that first concept.

Regular non CMT people get PN from statins.
Here is the link again of a collection of statin research papers, most of which I think most doctors have never read:

Here is the list again:
http://www.greenmedinfo.com/toxic-in...drugs?ed=35335

Also today, more biochemistry is being done on cholesterol, especially cholesterol sulfate, Dr. Seneff being the main researcher:
http://people.csail.mit.edu/seneff/

This work is really compelling. There are also YouTubes with her.

Providing sulfate, therefore is helpful...and our epsom salts and magnesium lotions are prime sulfate sources.

This is just one link from her page:
http://people.csail.mit.edu/seneff/s...ink_twice.html

Are you posting about the medical list on the CMTA site? I doubt that what is on there is out of date as it's from a very informed site - the CMTA. The list is continually moderated and compiled by neurologists, etc. #6

http://www.cmtausa.org/index.php?opt...15&Itemid=50#5

So I am confused if that is what you are posting about. They do not mention PN on that site only the medicines to watch out for. That's what I meant by that site. I was posting about "muscle weakness", not PN, from statins and the fact that I know people in the general public who have muscle weakness from statins.

As far as B12 on that site they could be not up to date on that as many other sites are not up on it. But again, I was posting about "muscle weakness" and statins for CMTer's and for some of the general public as well. I see nitrous oxide and a B12 deficiency. I never brought up B12. Did someone else?

Statins do not appear to be good for anybody regardless if there is a possibility of muscle weakness or PN.

Thanks for your help in explaining this as I'm probably not reading your post right. I know I mis-stepped when I posted that there would be only muscle weakness and not PN concerning statins. Sorry for that.

In your wiki site it shows a foot with CMT. However, not everyone with CMT has high arches. A CMTer can have high arches, flat feet, normal feet or one high arch and one flat. It depends on what muscles are affected. Symptoms of CMT can become evident when you are young, old or in-between or symptoms may never be that evident. The same with the way a CMTers legs look for example. They can be normal looking even though they are weak. Symptoms depend on so very many things and also the type and subtype of CMT a person has. And symptoms of CMT vary greatly even within the same family. I know this for a fact. CMT can also be misdiagnosed even today.

I am no expert but I do live with CMT everyday and I have known and seen it since I was 5 years old (not in myself as I did not have symptoms for years and years). Other people can only read about it and lots of that information is not up to date or accurate either.

There is a question in the questions section, that says statins are okay for CMTers. Statins are not okay for others, so I would think the same would go for CMTers. But of course they are not going against "standard of care" which still includes statins. (much to the detriment of many many people today.). The "standard of care" that doctors decide upon, obviates any new information or warnings. It takes a mountain to move them once they decide on something, even in the face of evidence.
The Vit D information that was recently released by that national committee is a good example... still recommending 800IU for adults when evidence is strong for higher. It will be another decade before they come around on that one, and they will eventually.

If you go to the questions area it is around #10 or so in the list.

Statins are in the mild to moderate section of the 3 lists on the site at another file. I just get so frustrated as all the new information keeps showing up about the risks and less about the benefits. If you read Dr. Seneff she explains that statins work well only in the very early phases of treatment, and then the toxicity begins. She explains why this is.

Kitt, I am not sure I understand what you mean when you wrote "If indeed you have CMT, that would not be the case."

Could you please explain. i assume you are referring to my post regarding my drop foot.

Just to further elaborate, the neuropathy was developing slowly prior to the drop foot, although I did not realize it at the time. After the drop foot was resolved, the neuropathy then progressed over the course of the next 9 to ten months, which brought me to the neurologist who then evaluated my condition and diagnosed my PN. Since she eliminated the other common causes of PN she concluded in her report that she suspected genetic PN.