I should hope you see some change within 4 days... but I don't know if that is enough.

You know that article discusses the NMDA pain receptors, and using a NMDA blocker to help. Magnesium does this.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist
most of the list is impractical for most people, but the DM and memantine (Namenda) are available and also the magnesium, of course.

And MSG....does the opposite...stimulates the NMDA receptor.

Are you using magnesium at all? It might help, if your problem is what the article describes.

I have the magnesium, have not been using it regularly. Will be more diligent. Does that mean that magnesium may neutralize this particular effect, allowing me to take the oxycodone, assuming the oxycodone was found to be the culprit?

That article and related ones seem to address a much higher usage than mine. Is it even possible that this is my problem? I am not too hopeful, but it is an easy fix, the burning is much worse than the muscle pain, stiffness and weakness.

Also, while I understand that one should only change one variable at a time to gain any real knowledge, I am in such distracting discomfort that I want to do everything at once to see a change as soon as possible. I can always re-introduce things slowly.

This body- wide burning can, evidently, also simply be a symptom of small fiber neuropathy. My skin biopsy did show fibers breaking down at the upper thigh. Since it works in a mirror image fashion, I assume the burning in my shoulders and upper arms is analogous to my hips and thighs, just as the muscle wastage in my feet and ankles is mirrored in my hands and wrists.

Thank you Mrs. D.!

Susanne C. perhaps the burning is due to CMT. (or partly). Some people (CMTers) experience severe neuropathic pain and require medication to control it. Just a thought. Perhaps it depends on the type of CMT as well. I hope I never have body burning. Legs and feet are enough. Hope you get some relief.

Thank you Kitt. Actually this is what I think is most likely, and of course I hope it is something else, so I want to try what I can.
I have a question just for you. Why do some websites, like Mayo, say that CMT rarely causes pain? If small fiber neuropathy causes severe pain, and CMT causes serious small fiber neuropathy, why would CMT patients not have pain? Many websites do say it can cause serious pain, but the ones that don't really anger me. My neurologist, who had praised my pain tolerance through a 2 hour EMG/NCS ( much of which I barely felt ) decided once it was CMT that it shouldn't hurt very much. That's just the SFN component. My foot, ankle, leg, hand, and wrist muscles are visibly wasted. My legs have the dead weight and stiffness of cement. I can barely go up steps. How can this not create pain?
The gabapentin had been controlling the burning until now. The oxycodone the shooting leg pains and other muscle pain. I was really getting by okay, in spite of increasing weakness. That was just the way it is and i was okay with it. This is a whole new ball game and I don't want to play if I don't have to.

I know. I have seen those websites as well. We know there are websites which truly do know and those that do not. I guess that's how misinformation gets out there.

CMT has taken much from me and it still is as it marches (progresses) on. Who knows how a person will end up. No one. It is a scary thing. All you can do is try and deal with the symptoms as they come along - and they do.

I know what you are saying about your legs feeling like dead weight and the stiffness of cement. I have said before that people who do not understand it - well how can they if they haven't walked a mile in the other person's shoes - should strap on some cement blocks and see how that feels to try and walk. I don't do stairs other than three anymore. It just does not work anymore at all. I go down those stairs backwards holding on to handrails as going backwards down the stairs is easier. You can tell when you have overdone.

My Mom used to say that her hands were like a cub bear with boxing gloves on. I am just beginning to find out how she felt. Not my hands so far though. Her feet/legs were affected also but her hands were affected first. And as we know, CMT symptoms vary greatly even within the same family. So true.

I do hope you get to the bottom of what is happening with you. Take care.

Hi Suzanne C. After looking at the Mayo site it said that CMT doesn't generally cause pain. But you know it might depend on the type. I do know of those who do not have any pain. So who really knows. Mayo doesn't go into all the types of CMT either and there are many types. Some other sites do cover all the types, etc.

I think the Mayo site is just an overview of it. JMO and I do have pain.

i get the heavy as tree trunks or cement feeling in my legs on any kind of exertion such as walking fast or attempting to run, climbing more than a few stairs, walking uphill. besides the numbness in my big toes, it was the first symptom that i had 11 years ago now. i used to run 8 miles or more regularly, i cant run more than 10 steps without this heavy dead weight feeling.

Kitt is this a symptom common or mainly indicative of CMT? i thought it was a general symptom of PN that of course not everyone has but some do.

I'm not Kitt, but I would say it isn't necessarily CMT. Even as a child I couldn't really run, and I certainly couldn't run even a few steps now. I think the cement feeling may be from the SFN, the muscle weakness and wasting is a CMT symptom. My numbness did start in my toes, but in 14 years it has progressed to my knees.
How do you line up with other CMT indicators? Difficulty in walking uphill or up stairs (and eventually down stairs) is an indicator. Is your PN idiopathic at this point?

i have those difficulties walking uphill and upstairs and am awkward walking downstairs. im officially ideopathic but pretty sure i have a toxic cause for my sensory motor axonal PN. im surprised because i never read before in 11 years that these were indicators for cmt.

echoes long ago,

Check this site out. Maybe it will give you some idea about CMT.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

There are many, many types of PN so it would be hard to tell without some further tests as far as CMT. Family history can also be a factor and help with a diagnosis. EMG/NCV testing can tell if a person has CMT 1 or CMT 2. And of course DNA blood testing for the types that they can now test for. That can also tell the sub type. CMT 1 shows as slower than normal nerve conduction speed. CMT 2 shows near normal nerve conduction speed or mildly slowed.

Unlike Susanne C. symptoms of CMT did not become evident until much later in my life. I could do anything and everything and I did for a long, long time. The symptoms varied greatly in my family and that is expected. No CMTer is alike.

I am not young either. I'm grateful that symptoms did not show up for a long long time. And then they weren't that bad at all. However, CMT did progress as it does and in the past three to four years CMT has really progressed for me. It has robbed me of much and continues to do so.

I do not need any heavy exertion such as walking fast (can't do anymore) to have my feet/legs feel like cement, can't run anymore in fact for the past say 18 years, going up hill is much easier than going down hill. That's the reason why I go down the few steps backwards using hand rails in my house. It is easier to do it this way as I've heard other CMTers say. I'm sure that's due to that peroneal muscle being affected greatly. CMT is of the PNS (Peripheral Nervous System). They now are finding it affects other places - depending on the type.

I cannot move my toes hardly at all. They are getting to the point of being numb. My feet/toes are very, very sensitive. I can't stand much covers hanging on my toes at all. I cannot stand on my tiptoes or my heels and have not been able to do that for years either. If I am on the floor I have to use a sturdy piece of furniture in order to get up. That's happened quite a few years ago. It's all progression of this wonderful (NOT) CMT. But you know that aging also comes into play as well and that is true for the general population as well.

For more information on CMT check out my site on CMT. At the top of this forum click on "PN Tips, Resources, Supplements and Other Treatments.

There is no cure/treatment at this time for CMT. Just no special diet, supplement or magic. A person has to deal with the symptoms as they come along. You can build up good muscle but not diseased/atrophied muscle. I also got AFO's a year ago now. They help some but I still use a cane and/or an arm. They are the least supportive kind for now. You lose more good muscle wearing them as well. But there came a point where I had to get them. These are called Toe Offs. I take them off around 7:00 P.M. at night. At some point I will have to probably have casted AFO's. Time will tell.



Hope this helps.