My 49 year old daughter has the inherited variety of PN (I have it, too..)..she just had to have a total thyroidectomy for cancer (in May 2015), and is having a TERRIBLE time recovering from the surgery, and finding the right amount of supplemental thyroid she has to take to make her feel "human" again, and improve the overwhelming fatigue. Does anyone have any suggestions for her to ask her Endocrinologist at next visit so that whatever meds they give her doesn't aggravate her PN? She doesn't need any more problems! As all of you know, doctors are VERY ignorant about PN!! THANKS!

Just curious as to what the inherited variety of PN is. Thank you.

It is a varient of CMT (Charcot Marie Tooth) Disease...

So is it CMT? And if so do you know the type? I have CMT. Does anyone else in the family have symptoms?

Thank you.

[QUOTE=Kitt;1162708]So is it CMT? And if so do you know the type? I have CMT. Does anyone else in the family have symptoms?

I am 83 years old, and I have been diagnosed for about 22-24 years...started with the usual numbness in feet, and progressed very gradually for until about 12 years when neuro-muscular problems began to develop..increasing weakness in legs, poor balance, etc. I now use a triangular shaped walker for security with my bad balance and I am not able to walk distances, and tire from walking and standing activities...

My daughter is now 59, and she started with the foot numbness about 6 years ago, and it is progressing just like mine did. NO FAMILY HISTORY...my Dad lived to be 87, and never had (or at least complained) of any numbness or leg weakness..however, he DID walk "like a drunken sailor" as he got older. .."ataxia")..My Dad came from a large family, and all of his relatives lived in Canada, so I didn't see them as they aged...however, I have corresponded with a cousin who lives in Canada, and she tells me that NONE of the brothers, sisters or cousins had/have any thing like this. My Mother's neurological family history is completely negative.

My daughter and I are both nurses, so we understand medicine and illnesses pretty darn well! I was diagnosed by Chief Neurologist at USC in So. Calif., so feel confident of the diagnosis..I have had several EMG tests over the years, also the gene testing by Athena Labs. My daughter works for Kaiser, and she has been tested by a Neurologist, and he compared my Lab results with hers, and he says we both have the same varient on the gene, but he isn't as positive about the CMT label, as my USC doc is...no matter why, nothing can be done or changed by the diagnosis.

I know my Neurologist very well, as he treated my late husband, who died from Lou Gehrig's Disease (ALS) 19 years ago. I saw my Neurologist yesterday for my annual (or bi-annual) visit..he still says "CMT", late onset (because of my age, and my daughter's age at onset.)

I have followed the CMT website online, and my daughter and I don't seem to follow the pattern that most of them have..one difference is that nether of us have ANY pain with our neuropathy! How's that for unusual, and lucky!!

I've tried Gabapentin, High dose Vit B Complex, B-12, Co-Enzyme 10, and any other OTC supplement you can name..NO IMPROVEMENT OR CHANGES!

We just don't fit any "usual" pattern...

It does sound like CMT from what you have posted. And it could have come thru your father the way you describe how he walked.

Symptoms vary greatly even within the same family. That's certainly true in my family. There is no cure/treatment for any type of CMT yet. I do not look for one in my lifetime. There is no magic bullet, supplement and the like. You just deal with the symptoms as they come along. There is lots of research being done that many people are not aware of.

I have done reputable research for almost 30 years. CMT is in my family from way, way back. I'm not certain that there is a "usual" pattern. A person can have CMT and not show any evident symptoms. But they can still pass it on.

Thank you for your reply.