Hi Susanne & Kitt,
Thanks for your answers. I probably don't have CMT. My EMG's were normal. I was just wondering because I have extremely high arches. It also seems my muscles in my legs are getting weaker and weaker. My skin biopsy was positive for SFN.
I'm just always trying to figure out what is going on.
Thanks again!

The weakness in the legs is suspicious of large nerve involvements. The nerves die back and the muscle follows. I cannot move my toes or the front of my feet and i have limited flex in my ankles, trying results in muscle spasms. My upper leg muscles are weakening, I need help getting out of chairs and up steps, it seems like I've lost the lifting muscles in my thighs in the past six months. CMT can progress to wheelchair, from my reading on other forums it seems like many people have more severe symptoms than the web info cut and pasted from the same sources would seem to indicate. The Mayo clinic site is particularly dismissive of the severity of the disease.

I always like to put it out there as a possible cause as personally I believe many idiopathic cases are actually CMT, and doctors jut have little experience with it. It does give closure, what it doesn't give is hope.

How long ago was your EMG? A lot depends on the ability of the doctor or technician conducting the test.

I completely understand so much of this, especially about not getting dressed up. I have always been a stay at home mom. I was a brilliant student, national merit scholar, recruited by West Point and the ivy league, but I never had the ambition for a career and coming from dysfunctional backgrounds, when my husband and I met at 17 in honors class freshmen year all we both wanted was a real family. I put all my skills into homemaking and homeschooling and was quite successful but I did not have to give up a satisfying and prestigious career because of this disease. I can imagine that would be much more difficult. My husband has a high profile, executive job, although he works at home, and while he has never been really driven, rather viewing it as a means to an end, there are a hundred social contacts he enjoys through work and he is like a little kid this time of year when the vendors send their Christmas baskets. He would deny it but he would miss the socialization and the importance.

I do enjoy dressing up, and I like to look as nice as possible. I just ventured for the first time into the hair coloring side of the salon, I have black hair and liked the silver coming in but wanted something totally offbeat, so I had purple streaks put in, very subtly, two underneath the top layer. The stylist wanted to put a dark chestnut rinse overall just for shine and now that the grays are covered I have to admit I like it very much. The purple makes me smile when I look in the mirror, it isn't terribly obvious, but I love it. My youngest son was disappointed, he expected a lot more purple!
I need things to make me smile. There are days I very carefully plan when and how I am going to take a shower, lie down for a while, then get dressed. There are days I skip the whole thing because I have other things to do. Too few spoons to be clean AND bake or shop. Putting on stockings requires a nice long rest and my hands won't be able to do that much longer. Wearing jeans and going somewhere in the car uses up breakthrough medicine. I wear long skirts and knee socks more often because so many pants aggravate the burning in my thighs. I do not like to leave the house without makeup so that is another spoon gone. I never could wear heels, my balance and gait would not allow that even when I ws a teen, but I love nice shoes and all of mine have to be orthopedic because I need maximum stability. I bought a pair of low pumps and wore them once for my daughter's wedding in 2011. I served all the food, it was here at our house, and I got through the day but I can't walk in them now.

I am beginning to feel that it isn't worth it to buy new clothes or accessories, that I rarely have the energy or reason to dress up, and that I walk funny and use a cane anyway so why bother?

The other major loss for me is the planning of large projects. I used to love to plan my projects, quilts, embroideries, laces, sweaters, gather my materials, daydream over my patterns. Now that it is obvious that I can only complete small, finite things like socks and scarves and baby things I really miss the idea that I could do anything. I thought once the children were grown lace tablecloths, heirloom quilts, and cross stitch masterpieces would flow through my fingers, but i work more slowly now and only have a few hours in the afternoon and evening when my hands aren't too numb to hold a needle.

Sorry, this has turned into a blog post...

Well, I have so much to learn about:

SFN
LFN
CMT

I have some idea of autonomic neuropathy. I know I have some features of it, mostly bladder, some bowel, and the Orthostatic Hypotension. Probably others.

One of the hardest things for me is that none of these conditions really has direct treatments, AND most doctors don't understand them well.

The ordinary person hasn't a clue. And really doesn't want to learn all that much about most illnesses.

I have to accept that, even when they ask and look interested, I can see their eyes glaze over when I try to explain. And the questions they ask tell me that understanding is so far away from possible that it wouldn't be fair to most people to try to clear up their confusion.

My SIL, a nurse, cannot understand WHY I would take a treatment for my Immune Deficiency that causes unpleasant side effects. 'Why not just forget about it? Just stop doing it.'

I have to work harder at letting go of my resentment that she said this. It isn't my problem, is it? If I worried about what others were thinking and saying about me I would be one unhappy camper most of the time!

So I will look up SFN, LFN and more on CMT. It is interesting that when someone identifies a condition, particularly genetic, that it gets their names! How many think some one with CMT has a dental disorder?

Hugs, Elaine

I've read about CMT a bit. Of course it's very complicated, but it doesn't seem like there are many treatments for the condition.

Did any of you have earlier family members with this diagnosis? Or that you think may have had this diagnosis but it was missed?

I know that Sjogren's Syndrome sometimes occurs in family members, and then people are alerted to look for it a bit earlier than they might have otherwise been.

I had never even heard of it, or of Primary Immune Deficiency Disorder, when they were diagnosed.

So many of us are wandering in the dark for so long until we find the right doctors and the right tests. And then there is a 'bit more light' but so often we have to provide our own light to each other.

Hugs, elaine

As I stated in my other post about Charcot-Marie-Tooth Syndrome (CMT)- there is no cure/treatment at this time. You deal with the symptoms as they come along. There are no supplements, pills, etc. - no magic bullet. Much research is being done concerning CMT as I stated. A person who suspects CMT needs to be seeing a neurologist who knows CMT. They are out there. You just have to find them. CMT is complicated because there are so very many types of it. There can be hearing loss, phrenic nerve (diaphragm weakness), vocal cord involvement all depending on the type of CMT you have.

CMT was first given a name in 1886 by Jean-Martin Charcot. His colleagues were Pierre Marie and Howard Henry Tooth. Jean-Martin Charcot is known as the Father of Neurology. He also is responsible for giving a name to MS, ALS, Charcot's Foot (which is not related to CMT), and others. He was the first to describe these. One of his students was Sigmund Freud. Jean-Martin Charcot truly was a gifted man.

CMT has been in my family forever. I can trace it way back thru the generations. There is no doubt about it or any of my family members being misdiagnosed. If you know CMT you can spot it in a minute. I have known about CMT since I was five (5) years old and that's a long time ago. There were no symptoms that I had for many, many years. And I did not need a neurologist or EMG/NCV testing to tell me what I was experiencing. I knew. But I saw the doctor and did the testing anyway. Myself and some of my fellow CMTers in my area have had more than one expert neurologist who knows CMT at our CMT support group meetings. Much was explained, for those who didn't know, and much other information has been given.

Hope you find the answer to your problems.

Hi, there are plenty of people in the general public who have high arches, flat feet, one of each, normal arches. So that alone does not say that you have a type of CMT. The fact that your EMG/NCV testing was normal tells me that you do not have CMT1 or CMT2. In CMT type 1, nerve conduction speed is slowed. In CMT type 2, the nerve conduction speed is usually normal or mildly slowed but the responses to the stimulus are small. If you have a muscle disease, the nerve conduction speed remains normal. The second part of the test determines the ability of your muscles to respond to electrical impulses supplied by the nerves.

I hope you find the answer. Take care.

I never say Charcot Marie Tooth for that reason, Elaine, it does sound dental! I always say hereditary neuropathy. No one gets that either. I completely missed the family connection because my mom was committing adultery and my dad wasn't my biological father. I did know my bio father, although he never acknowledged the relationship, and I knew that one of his legitimate daughters wore leg braces from childhood and he self medicated with alcohol and had trouble with his legs and hands and getting up from chairs, etc. I had gotten so used to ignoring that as part of my family history I didn't tell the neurologist about it until the diagnosis had been made. It only confirmed it.

My eldest son has it and is already having trouble walking and playing the piano at 29. He was an accomplished pianist but his hands go numb after a few minutes.My daughter recently had a normal EMG thankfully, and my second son has a few symptoms, mostly in his hands. Our two youngest are adopted.

Hi Susanne,

I say it. But I explain that CMT is named after the three doctors who gave it a name. I also tell them that it is also called Hereditary Motor Sensory Neuropathy (HMSN). If eyes glaze over I simply leave it at that but I make certain that they know it is hereditary and not auto immune. CMT is one of the most common "inherited" neurological disorders.

Interesting, Kitt. I don't know that 'not autoimmune' makes much difference with most people. But maybe it does.

Perhaps "genetic' is more understandable than 'autoimmune'. Many people think that autoimmune means "all in your mind!". Well maybe not Lupus or RA, since I think they have higher visibility perhaps?

I just gave up on explaining, except when I think I'm talking to some one who might really understand. But when I has come to my own family, especially the medical side of the family, the understanding seems even less!

On the whole, since doctors often don't understand, I guess we can't expect the average person to 'get it' either.

And honestly, on some of my forums i hear the most...oh dear I was going to write 'nonsense'. I try not to be judgmental. But today on one forum a poster was rambling on and on about how 'bad and evil' adrenaline is. First, it is usually called epinephrine in the medical community and second is it vital to the functioning of our body.

I tried to explain what epinephrine (adrenaline) does, and she said, "I think you're talking about Dopamine". I should have given up at that point.

And she has a condition. It turns out that having a condition doesn't give you any greater brain power or common sense. So I do understand what doctors often have to deal with.

I have learned so much and found so many ways to deal with my conditions on the forums.

I am not finding ways to deal with my neuropathy so much as ways to accept it.

Today I was reading some research done in the 80's which established that when you have peripheral neuropathy you cannot compensate in your BRAIN for the nerve damage in your legs. Of course we know that now, and those of us who have it surely know it. AND YET, I have people who watch me walk tell me I just need to exercise more and build up my strength!

As I said, when I began to have nerve damage, I realized how insensitive I had been to those who have had strokes and other sorts of nerve damage. I thought they just had to try harder.

Maybe I would be happier today if I had never learned more compassion, the hard way by experiencing first hand the conditions I failed to understand earlier.

But I feel like I've learned a new way to look at life. It has to be accepted. It just can't be wished away, or done away with by will or anger or denial.

Hugs, Elaine