Good responses here!

If you are taking any RX drugs for anything, you should list them now. Antibiotics, to lower cholesterol, vaccines, OTCs

History of trauma or surgery to the back, or knees or legs?

Some idiopathic PN is environmental, meaning toxins. Alcohol is only one of many that cause PN.

If you are smoking, it is time to quit.

We have a nice support thread on quitting alcohol here:
http://neurotalk.psychcentral.com/thread104096.html

If you are low in magnesium and don't eat magnesium containing foods, nerve problems are only one manifestation of this. Soaking in a bath of epsom salts in lukewarm water will reveal if you feel better afterwards. 6-8oz in a bathtub...don't use really hot water.... it may sting or hurt then.

People who do not eat fish (salmon) or flax containing grains, become low in Omega-3's and these nutrients repair the nervous system. So diet is very important.

Mrs. D,

You mentioned for people who do not eat fish or flax become low in Omega3's. I recently purchased a bottle of Carlson Fish Oil Omega-3's Dha & DPA with lemon taste soft gels, 1000mg's. I am one of those people who rarely eat any fish; once in a while, cod or tuna from the can.

I have been taking about 4 per day of Benfotiamine 150mg's. and once or twice a week one 100mg R-Lipoic Acid (get too hyped with more) and one of the Stabilized B-12 Methylcobalamin a few times a week. For some reason; not sure have been hesitant and have not taken any of the Fish-Oil (which one of the posters had recommended).

After reading your input; might give it a try. (Not sure; but I think the possibility of this coming up on me could be part of the reason I am hesitating.)

Your thoughts would be appreciated regarding this would be appreciated.


Gerry

If you do not eat enough fish or flax products, you have to get your Omega-3's from somewhere.

Start with 2 a day. That may be enough for you. Take with food.
You can stagger them or take together.

Carlson's is a good brand. You chose well.

By my research and by reading the threads on here. I feel that CMT in the worst case scenario and not knowing if I have this bothers me. I wish I could find out. I hope that possible future tests can help answer this for me. I hate not knowing what the cause of my problems are

If I do have CMT 2. Which my neurologist said could be possible? Would my exercise and training or type of work make it worse? Am I doing my feet no good by continuing with my profession? Is it possible to have CMT 2 and have it in a mild form or have it develop slowly? Or is this type of PN just bad news all round?

DNA blood testing thru Athena should give you an answer. As said before, it is expensive. I am not suggesting that you do have a type of CMT but it probably is worth looking in to. A good neurologist who knows CMT can be of help to you.

However, no one, not even a doctor, can tell you how you will end up if indeed you do have a type of CMT. CMT is progressive no matter what you do. There is no magic bullet, supplement, etc. You deal with the symptoms as they come along. I wish you well.

So in regards to the medicine, my doctor prescribed it for me and I am going to start it, but I do not have tons of cramping, some burning, but it is not constant. My feet are numb to touch, they freeze all the time, can feel if stabbed with something, but that is it? My concern is if I start the medicine, now in my 30's when my symptoms get worse as I age will the medicine still work. I don't want to take it until I really need it. Am I being crazy? The dr. Said it might get rid of some of the numbness or slow progression? I am not under the impression that it can slow progression, which I could be completely wrong. I forgot to say my hands are affected as well.

I have CMT 2, and I have tried to continue hiking, on level ground, for as long as possible. I use two poles as my balance and awareness of where my feet are are both very poor. It is my understanding, and I have tried to convey this, that you cannot exacerbate CMT through sensible exercise. Exercise to the point of exhaustion, however, is not advised, and may cause a flare or injury just as it would in other people. In the past year I have lost a lot of ground, however, and seldom walk any more. This cold winter has also made me a shut in.
If it is CMT, you will also not slow progression through exercise, although you may strengthen the unaffected muscles.
In short, you cannot really hurt yourself and may help yourself through exercise, especially as you seem conditioned to it.
If you have sensation in your feet, and a good sense of balance and can tell where your feet are ( yes, in more advanced cases of PN it is possible to fall over because your feet got tangled up while you were sitting. It happens quite a lot to me.) you are probably fine with the level of exercise that you are used to. There is no reason implicit in having PN or CMT that you should cut down your level of activity. Doing so may result in weight gain which will stress weakening muscles more than exercise.
You will have to learn to let your body be your guide in deciding how much is enough and when to rest. Sufficient rest is very important, and you may have to learn to balance out your life more, I believe you mentioned an active social life so if you are a "burn the candle at both ends" kind of person that will not be best for you.
I just want to reassure you that continuing the level of physical activity that you are accustomed to is not going to affect you as much as you seem worried. You can go by how you are feeling.
If you have limited sensation you have to be more careful, but I have not seen you mention that.

if it does turn out to be CMT it will progress. You will be quite aware of it. You would then find that you just cannot do what you used to do including hiking, walking very far, etc. It does happen. As Susanne posts that she has lost ground in the last year. I have in the last few years. Symptoms of CMT did not rear their ugly head until much later in my life. It could be of great help if you did find out whether you have CMT or not. Again, no one, not even a doctor, can predict how you will end up if indeed you do find out that you have CMT.

Todd MacCullough who played for the Philadephia 76ers a number of years ago ended up having to quit his career when he found out his trouble was Charcot-Marie-Tooth disease. Here is a site about it:

http://sportsillustrated.cnn.com/bas...ulloch_out_ap/

Julie Newmar is another one. She played Catwoman in the 1960's Batman series.

Yes I am of the same opinion. I wish I could cope with the symptoms and not have to take it. But I felt I needed it. I started with only 600 mg for about 6 months. I have recently increased it to 900 mg. apparently you need to be taking around 1800 mgs for it to work at its best. But I find that I can cope with this amount and the side effects are minimal. I am naturally concerned that what will happen in 10 years time. I am only 44 years old and exercise is part of my profession being a full time sports coach. So far I have managed to hide my condition to my work. For how long plays on my mind. I hope it can be till I get to my 50's?? If only I could really know exactly the cause of my condition?

You're not being crazy, but I don't know about that doctor. If gabapentin could/would slow progression, people wouldn't have to increase their dosages periodically until the medication no longer worked. I'm also curious where he got the notion it had any effect on numbness(?)

Everyone is different. My last neurologist pushed it on me for burning pain that was keeping me up nights; wrote a scrip for 300 mg. capsules (I forget how many per day). I asked him to write it for 100 mg (the smallest they make) instead, and I'd take it "as needed" and titrate it myself—if I needed more/ a higher dose, I could call and he could write another one. I'm very sensitive to gabapentin (and I've since met others who are also). 100 mg at night was enough to carry me through 24 hours, and I didn't even need it every day.

I had only taken it a few times when I started R-Lipoic Acid (RLA). The RLA stopped the burning pain completely within a few days, and it hasn't been back since (except if I eat something I shouldn't) and I haven't needed/taken the gabapentin since.

Doc