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.

Thank you for your reply, Kitt....it sounds like you have studied CMT for some period of time. I have researched it on the internet, and attended several Conferences on the condition...even traveling a few years ago to Wash., D.C. from California. I am curious if you have encountered any families where 2 members of the family develop it so late in life? Me in my 60s and my daughter in her early 50s?? No symptoms before this time.

As you can see by my Profile, I joined this group in 2007, so I have visited it many times in the past few years, but the "usual" pattern of Peripheral Neuropathy didn't seem to fit our condition, either. so the information being posted was not of much use to me. I DID try several of the suggestions and supplements PNers posted, but nothing was of help to me.

I visited it again 2 days ago (for the first time in a long time) because I was researching Online Forums for my daughter's new Thyroid Cancer problems...I was curious if any of the medications or treatments they are going to be giving her for the Thyroid, are going to cause difficulties for her Neuropathy! NONE of the doctors treating the 2 different conditions/illnesses will think of putting them together, and taking both int consideration for their treatments! We have to manage your own illnesses OURSELF these days! For example..my Urologist would prescribe Cipro or Bactrim for my Urinary Tract Infections, and it took my own research to find out that they TOTALLY messed up my Neuropathy!

Yes, I developed symptoms later in life. I also know of another gal whose father was in his 80's before he had symptoms of CMT and diagnosed with it. The gal and her brother finally knew how they inherited it. Before that they were baffled. If her father had died sooner they never would have known.

I've been to many CMT support group meetings. Dr. Michael Shy was at one of them. He is an expert on CMT. He is at Iowa State University, Iowa City, Iowa. I have never seen him as a patient - wish I was closer. But there is nothing you can do about it anyway. Just deal with the symptoms as they come along.

There have been other doctors who know their stuff at these meetings as well. Yes, you have to do your own reputable research and stay up on it. And there are so very many types of it identified so far. Most who have CMT have the more common types. Thank you for your post.

Thank you for your prompt responses, but they keep triggering questions in my mind...have you had the VERY COMPREHENSIVE genetic testing done? My Neurologist had mine done about 10 years ago (hoping that I had one of the CIPD types that respond to IV globulin)..no such luck..then he told me when I saw him this week, that there is now MUCH more advanced genetic testing available now to identify MORE exactly what the type is, but Medicare doesn't cover the cost and he said it is VERY expensive. I thought about it after I got home, and wondered if I should have it done or not, for my family's information...but..I know that one daughter has it (confirmed by Kaiser Neurologists and comparing my lab results with hers)) and what good would it do my other daughter, and my grandchildren to know? Would just give them something else to worry about in their lives, you can't do anything about it, so I'm still "mulling it over"....Kaiser even told affected daughter that they would pay to have all blood family members tested if we wanted it, but (so far) we have declined their offer...if there was a treatment or cure", or preventative measures to take to avoid it manifesting, I would jump at having the testing done, but under the current understanding and treatment of the disease, I can't see the benefit of further testing..."yuh got what yuh got..manage it!"

Here is a site for DNA blood testing. They are good.

https://athenadiagnostics.com/

They are expensive if you have to do testing for all of the types. I really do not know how it would be paid for. They do have a telephone # so that you could ask them. They have many, many tests for the different types of CMT that they can test for. Even if you do not test positive for CMT it does not mean that you do not have it. It just might be a type that they cannot test for. But, again, they can test for many, many types of it.

I knew what I had before I ever saw a neurologist. And I only had a few symptoms at the time. It's in the family. I have not had any DNA blood testing done as there is no need for that for me or any member of my family. CMT is there.

Take care and thank you for your posts. Hopefully I have helped some.