the post talks about "fuzzing" but I am guessing that means "buzzing" My feet really light up as I put it when I exercise. The buzzing intensifies. I feel the reason is the activity makes more blood come to the area and so the nerves fire more??? I don't know if that is the case...

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?

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.

And --
 

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.

Susanne hi and thanks for your personal information. It is so good to talk to people like you. In my opinion, it is far better talking to you than my Dr.

My situation is this. Recently divorced and finding my way back in my life. Just. But it has taken its toll on me I feel. That and the transition of a new job in a new part of the world. Coupled with the fact that it is thousands of miles away form my son, friends and family. I sometimes suspect that all this negativity and stress could have something to do with this.

My life has really been in sport. I regards myself as physically capable right now, but defiantly noticing problems in my balance and sensitivity with my feet. That and the uncomfortable feeling I now have with them. I am sensitive. What I mean by that is that I am sensitive to any kind of change in my body. Always been this way. So I have noticed this very early on I guess. I have always had excellent balance and coordination and I have suddenly noticed this regress.

My goal is to somehow push my way into Mgt. without anyone knowing that I have this condition. But at the same time try and save the muscles I can and have with an exercise plan. You are right. Nothing too vigorous. But enough to stop atrophy or at least strengthen the other muscles that are not affected. It is only my feet. Even though the EMG test said that it was mild in my hands too. But at this time I have had no loss of feeling and they are fully functional.

My neurologist reckons I still have time on my side and said exercise was a good idea.

For me right now, the hardest part is twofold. Firstly I hate taking medication and now I need it and must adapt to it. I hate side effects. Secondly, is the new uncomfortable sensations in my feet. They naturally worry me and it is the not knowing what is going to happen and how much time I have that plays on my mind. You mention cold weather. Is it normal to be more affected in colder conditions?

Thanks for chatting.

Yes, cold weather is very much of a problem for many PN cases and all CMT. As Kitt said we all have cold feet and legs all the time, and keeping warm is a challenge. I wear long underwear in the house- and keep the thermostat at 72.
My husband and I were just discussing whether we really should move to a warmer climate- the rational answer is probably, but being from the Philadelphia area and being very attached to it we could never move.
My hands are numb now, especially in the mornings. My son, at 29, can no longer play the piano for more than a short time. He is very affected and frequently turns his ankles. You must watch those ankles- if it is CMT they become very thin and fragile. Some store bought bracing might relieve your mind.
The stress that you describe in your personal life could easily have brought out your symptoms- stress, medications, other illnesses, often activate latent CMT, or aggravate existing PN. It is important to get a handle on that as much as you can. Your plan to move into management is a good one. My son is a university professor in China, and feels that teaching is a good career for someone who is disabled, as he is likely to be, having severe symptoms at his age. While you cannot tell how fast and far your disease will progress it makes sense to plan what you can for the future.
If your doctor suspects CMT and mentioned it, and your father has symptoms, that is probably what you have. You cannot assume, and neither should your family, that because his symptoms are mild that yours will be too. On the other hand you do have to get on with life, you are too young to quit, and are still in relatively good shape. My father acted like there was nothing wrong with him, but he drank constantly to kill the pain, and could not get out of a chair. I have a half sister who wore leg braces from early childhood. It affects everyone differently. I was clumsy and uncoordinated as a child, and walked on the sides of my feet.
On the other hand, it will not hurt to study and follow the guidelines here for supplements and diet and lifestyle guidelines, as they have been found to help many people. If yours is not CMT after all, you may be able to benefit from them.
Eventually you will get used to the sensations in your feet and legs and it will not be so distracting. My legs are currently numb to hip level. I really do not know how I manage to walk, but I don't think about it much at all. The first few steps are always hard, but then I just keep going and it gets easier.

Susanne hi. I am sorry to hear of your condition and your families conditions. If it is CMT, which is suspected, at least I have had a good time of it upto now. I actually now worry about my son and have I passed this onto him? But I have told myself to not let that get in all the other mess in my head too. Just too much.

I am fit and can walk and run. I have symptoms, and yes it will progress. But you are right I am in charge here. I have to decide what is best, what to do and what not to do. I am a teacher by profession. It is something I can defiantly do in future years if needed.

Good to chat with you again.

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

Wow. More great information. Much appreciated too. I will look into this other stuff.

Got caught out in the cold again today. I had two pairs of socks on too, but it still didn't help. Standing on the cold concrete of the streets must be a no go for me for any length of time.

Get me back to CA ASAP.

Thank you. I wondered about that as well. I go again in February, and am going to research as much as possible before I go back. I with there was a doctor whose specialty was hereditary neuropathy but have not found one yet. The first neurologist didn't want me on anything until I needed it and said we would treat the symptoms as they come. But he is now 2 hours away from me. I may keep looking.