[Kirky]

At first I did not know what it was? I have now finally been diagnosed. But if the symptoms keep up there progression as they are so rapidly doing. What can I expect a year and a half from now?

They tell me it is Motor and Sensory Axonal Polyneuropathy, but my symptoms certainly feel far worst than mild. The Gabapentin does not really help.

Has anyone gone through a rapid decline? Do things ease off? Is it because it is a bad winter? Could living in a warmer climate help? Is stress making it worse?

The big question? How can you switch off thinking about it?

[Stacy2012]

Its hard.

You know, I find myself saying...this time last year I could still have a job and work. I could still wear shoes. And so on and so on. I have flash backs of what I was doing in March last year, buying new shoes for a new job...both of which are gone now.

My burning got so bad, I had started a new job in March and by June I quit due to burning and by July everything changed. I had gone to Disney World then this past November when I went to Florida no way could I go and I doubt I will ever go to Disney World again.

How do I stop thinking about it? Reading on here and the people who have it worse than me. Thinking of friends and loved ones who have cancer and I don't. Trying to be thankful for what I do have and can still do.

It sounds cliche' but I really do look at others less fortunate and appreciate my circumstances more. I just try to always focus on the positive, which is hard for a negative person such as myself.

Lastly, I have not given up hope that one day God will heal me. Without hope it becomes dismal.

I also accept that there will be dark days when I have a pity party all day and I allow that without guilt. The key is to not stay there.

Good luck, it's not easy.

[Kitt]

Originally Posted by Kirky

At first I did not know what it was? I have now finally been diagnosed. But if the symptoms keep up there progression as they are so rapidly doing. What can I expect a year and a half from now?

They tell me it is Motor and Sensory Axonal Polyneuropathy, but my symptoms certainly feel far worst than mild. The Gabapentin does not really help.

Has anyone gone through a rapid decline? Do things ease off? Is it because it is a bad winter? Could living in a warmer climate help? Is stress making it worse?

The big question? How can you switch off thinking about it?

Polyneuropathy means many nerves affected. No one, not even a doctor, can predict how you will end up or how bad things may get. As far as a bad winter or going to live in a warmer climate - no one can tell you how that would be either. Big stresses are not good for anyone. Something we could do is always taken away and so the grief process begins again. How to stop thinking about it - I don't know.

Does anyone in your family have any of the symptoms that you have? Here is a good site to look at. Reviewing the entire article would be of help.

http://www.nlm.nih.gov/medlineplus/e...cle/000750.htm

I believe in another of your posts your neurologist mentioned CMT2. There are over 70 types of CMT identified so far. I am not a doctor but I am thinking that you have a type of it.


Hope you find an answer.

[Kirky]

I think I am in a bit of a state as I'm am unsure and very afraid. Not too sure about anything. I would love to just control the nasty feeling of not being able to ware shoes without discomfort. This makes me think of the worst? Sounds like this is a common symptom. I guess I just need to live with it like everyone else here on this site. If there was any way of measuring things? I'm trying to experiment with supplements, improving diet and no more alcohol. But no improvement at all yet.

[Kitt]

Originally Posted by Kirky

I think I am in a bit of a state as I'm am unsure and very afraid. Not too sure about anything. I would love to just control the nasty feeling of not being able to ware shoes without discomfort. This makes me think of the worst? Sounds like this is a common symptom. I guess I just need to live with it like everyone else here on this site. If there was any way of measuring things? I'm trying to experiment with supplements, improving diet and no more alcohol. But no improvement at all yet.

There is no cure/treatment for CMT. No magic bullet, no supplements, pills, etc. A person should eat healthy, exercise within reason and deal with symptoms as they come along. Moderate activity is fine and know when to stop as far as exercise. Swimming is very good. Moderate consumption of alcohol is fine but not over indulgence. Alcohol was removed from the medical alert list in 2004.

Hope this helps.

[Kirky]

Originally Posted by Kitt

There is no cure/treatment for CMT. No magic bullet, no supplements, pills, etc. A person should eat healthy, exercise within reason and deal with symptoms as they come along. Moderate activity is fine and know when to stop as far as exercise. Swimming is very good. Moderate consumption of alcohol is fine but not over indulgence. Alcohol was removed from the medical alert list in 2004.

Hope this helps.

Is it possible just to get used to the bad burning and tingling sensations?

[Stacy2012]

Any alcohol at all send my feet into a flare. Sugar and carbs will too if I consume too many.

I do not get "use to" the burning. I have not really made any huge improvements except some minor help with zyflamend. I consider myself blessed that it is not getting worse.

[tboots125]

Kirky, I have found Nortriptyline gives me relief of the burning and tingling and the sharp electrical shocks as well.

[Kitt]

Originally Posted by Kirky

Is it possible just to get used to the bad burning and tingling sensations?

You should ask your neurologist what you should do about that. I only have that if I walk or stand too much. Food or alcohol does not bother or cause it. Just speaking for myself.

Also, as far as alcohol is concerned for a CMTer, it is what I posted. Moderate consumption is O.K. You cannot over indulge. As I said, alcohol was removed from the medication alert list in 2004. This information is only for a person who has CMT.

An added note as far as shoes are concerned. If you have weak ankles you can wear a high topped athletic shoe or a boot that is high enough over the ankle. This can help a lot. It worked for me for quite awhile. Put a little padding in which also helps such as Dr. Scholl's odor eaters or the gel insoles. You can experiment with that.

[Susanne C.]

Kirky, you are still on a relatively low dose of Gabapentin, aren't you? Therapeutic doses are about 1800-2700 mg daily. It still doesn't work for everyone even at that, but you usually won't know if it works at lower dosages.
Dr. Smith has has good results on the burning with R-Lipoic acid. I have started that and have noticed a difference in the burning skin on my thighs, it seems to help.
I do think that you get used to some of this. It doesn't stop being painful but it stops being alarming.
I also think you probably have CMT, and neurologists often diagnose it very casually as if it weren't a really tough thing to deal with. They can't treat it so they drop it on you and walk away, at least mine did. No one can tell how it will progress, but rapid progression may be followed by some stability for a while. It does inevitably progress.
You are, understandably, looking for a quick tun around with this, but it isn't likely to happen. You may achieve some little improvements, you may stabilize for a while, but the best thing you can do is come to terms with the reality that you have a chronic illness. There are a lot of books on the subject, some are quite helpful. You must also decide if you want your doctors to be more aggressive in pursuing a diagnosis, which may always be elusive, and in treating your pain.
Yes, the cold makes everything worse. It has been a rough year for many of us.