No idea. All we know is that blood work has not provided an answer.
Do you have any ideas or questions that may guide me in the right direction? Thanks !

DNA blood testing might be in order. However, it is very expensive. The testing might be able to help identify which type of peripheral neuropathy you have. There are many types. Just a thought.

Hmm. I wonder if that's covered here in Canada. Most testing is. Thanks for the info. I will keep plugging away and pestering my doctors for more testing, because who knows how much worse this will get without proper treatment.

If it's an inherited peripheral neuropathy there would be no cure/treatment. It would be nice for you to know exactly what it is you are dealing with. I hope you get an answer.

I have a nagging feeling that my past medications have something to do with it.
In particular -macrobid and clonazepam
If that's what is was, then I will stop the clonazepam and hope my nerves regenerate in time

Just a reminder:

You cannot stop Benzos quickly...they have to be tapered very slowly. Clonazepam has a very long half life in the body, so
consult the withdrawal sites for ideas about how slowly to
taper. It may take months to do so successfully, and expect
symptoms to escalate at times as well.

Klonopin comes in various dosage sizes than lend well to a slow taper.
A generic may not.

from http://www.rxlist.com/klonopin-drug.htm

Macrobid has a moderate to a significant risk for a person with CMT.

Wow, so I just finally had a few minutes to look up CMT..and it sounds exactly like me.
the neurologist JUST pointed out my high arches too. Do you think that unusually low creatinine can be a sign of muscle wasting ??
My arms and hands are very weak and painful. However, my whole body is affeted, remember. It started with the nerves of my bladder spasming and then burning down my thighs with pelvic pain. I just want an answer . :(

With CMT I do know that you can have high arches, normal arches, or be flat footed. Or you can have a high arch on one foot and be flat footed on the other, etc. It depends what muscles are affected.

There are so very, very many types of CMT that it would be hard to say. And so many other peripheral neuropathies out there. DNA blood testing, very expensive, might give you an answer.

I know that low creatine can cause muscle weakness. However, with CMT we have muscle weakness, atrophy, etc. already. So it seems creatine does not enter into the picture for CMT. IDK

Just a note to explain:

Creatine is not the same as Creatinine.

Creatinine is the by product muscle metabolism.

http://www.nlm.nih.gov/medlineplus/e...cle/003475.htm

When creatinine is elevated...that is a problem. Mostly indicating kidney functions are not normal, and it is building up in the blood.

Have low creatinine therefore in testing is good.

Creatine can be taken as a supplement. Bodybuilders use it heavily, to build bigger muscles.