All PN is not degenerative. The hereditary types are, but others can be managed quite well. Some toxin induced PNs can be permanent if nerve cells die...those cannot regenerate then if they are dead.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury

If you don't manage PN however, and make the changes your nerves are asking for, and ignore it instead, it will progress.

People who have been poisoned with arsenic even can get somewhat better depending on the amount of the poison.
Some poisons like Thallium however are permanent and often fatal. (both cause severe PN).

Peripheral nerves can regenerate. Even doctors are taught this.
So telling you will degenerate is not fair and in fact very alarming. You have no proof at all at this point that you have a genetic form of PN... like CMT.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury

Let me tell you this little story. My doctor reacted to my latest request for another B12 test, saying that "oral B12 does not work"... but you can have the test anyway. So when my results came back very high, she was embarrassed. She like most doctors, just doesn't know everything. I was testing out the new Puritan's Pride methylB12, and getting ready for another metformin trial, so I really wanted to know if the Puritan's works. And I can say, for me it is labeled correctly. No cheating on ingredients inspite of the low affordable price.

So will you deteriorate, Shezian? Don't worry about it yet.

the bottom line is that nobody knows how your PN will progress, if you will progress or if you will get better. everyone is different. different causes, different genetics, different metabolism, different healing capabilities. for anyone to predict would be a guess at best and uninformed arrogance at worst.
the best thing you could do for yourself would be to provide yourself the conditions that would best lead to the regeneration of your nerves. exercize, proper nutrition, eating more than once a day, supplements, cutting out alcohol totally for a long period of time to see if that helps, keeping track of what is happening with your pn on some kind of a log or calender you can write on. good days, bad days, if something is helping or hurting and for how long it is helping, when you started taking something etc. this way you can look back over a long period of time and see which direction you are heading in.

there are people who have posted here who have gotten better. there are people who have improved somewhat. there are people who have stayed the same basically and there are people who have gotten worse. these cover all ages from pre teen through 80. there is really just no telling how PN is going to play out.

All true except for CMT. It is progressive no matter what you do. It does not get better and will not get better. However, in saying that, no one not even a doctor can predict how you will end up. CMTers symptoms are not the same. Symptoms vary greatly even within the same family.

As I said, CMT does progress and there is no cure/treatment for any of the types at the present time. And there are MANY types of it. Much research is being done but I doubt that I will see anything, short of a miracle, in my lifetime.

Even the doctors/neurologists who know CMT say that even with some kind of treatment a person would possibly just stay the same as they are now. That would be O.K. too. But a person more than likely would not get better at this stage of the game.

I wonder how much medication would cost and who is going to pay for it? Who will be able to afford it? They never seem to mention that at this point. It will surely be interesting if I live to see that day.

Just curious how do they diagnose CMT?

Also, kitt, what makes you think l have this?

Nobody has suggested this.

Sue

I gave you a link that even had photos on it. Explained it very well there.

I will share a story about my bestfriend. Hopefully, it will inspire some....
She was diagnosed of Breast Cancer, Stage 4 in July 2011. It has metastasized to her lymph nodes, bones and lungs. As all oncologists are trained, chemo was the first line of treatment. She had the chemo, but after the first session, she decided her body cannot take it. Her doctor told her in strong words that if she does not go through the chemo, she will only live 6 months. It was very devastating hearing this from her doctor. After praying for guidance and research, she went for Homeopathy.

To make a long story short, she had her pet scan in March and her cancer is 90% gone! Thank God! She still continues her homeopathic treatment and hopefully, she will be totally free of cancer soon.

Mrs.D and Echoes wrote it very well, doctors do not know everything and nobody knows how our PN will progress.

Keeping your spirits high can sometimes be difficult when you are pain. I, too, am struggling on this on some days, but I keep myself busy and yes, I pray.

If you develop severe PN symptoms and are relatively young, CMT or hereditary neuropathy is always a possibility. If your symptoms are truly sudden in onset as you describe I think this is less likely, but more likely to be a reaction to something and therefore treatable, but largely on your own. You will have to do the detective work and find the cause in the absence of medical testing. We can only suggest possibilities, which you have to investigate and decide how and if they apply. Supplements, nutrition, and lifestyle are all keys to treatment, but nothing is harder to apply. I get to relax and just take a pain pill for my CMT because it is not treatable, but I also get to install grab bars and try to figure out how to live in a three story house when going up steps is becoming more and more difficult and painful. I would rather try to get better, even if it were a trial and error process.
If you did not display an awkward gait, uncoordination, accident proneness, lack of athletic ability in running, skating, balance, etc. as a child, it is unlikely that you have CMT. Do not always fasten on the worst diagnosis, not that this is the worst, only that it is progressive and many other types are not.

Hi. I have to disagree with what you said in your last paragraph. You do not have to have had all or any of those symtoms as a child. I did anything and everything for a long long time. CMT symptoms can become evident when you are young, old, or in-between. Or they might never be that evident. Symptoms can be chalked up to some other disease/syndrome.

My symptoms were not evident until around age 50. The symptoms were not bad at all and hardly noticeable until around age 64 when CMT started to limit what I did. Symptoms of CMT vary greatly even within the same family and that is true in my family. As I said, I did anything and everything for a long long time. Some back in the family had symptoms at age 11 and others in their 30's and others much later as I have experienced.

Your symptoms must have become evident when you were a child. I believe that's what I have read.

Hi,

First off, I do not "think" that you have CMT. I am in no position to say that. Sorry if you were under the impression that I think that you do. I was, and am, giving you ideas, resources, etc. so that you might be able to rule it in or out. There are so very many types of PN out there. CMT is just one possibility as others have said.

Under "PN Tips, Resources, Supplements and Other Treatments" at the top of the forum you will find much information concerning CMT and there are sites to click on and read about it including diagnosing it.

Hope you find an answer as to what you have.

It appears to me that the doctor who did the tests, told Shezian in a way that suggests a hereditary factor that cannot be influenced. Didn't say the words exactly, but implied it.

Most early symptoms of PN can be self limiting, and go away even because they are reactions to something in the environment or reactions to a viral illness.

I think if she continues further testing for autoimmune disease is warranted, and consideration of gluten as a trigger should be made.