Working with so many of you every day, I am what you might call instilled in CMT. I read your letters and talk to CMT people every working day of my life and, believe me, you are not far from my thoughts on off hours either.

When things happen often, they tend to become issues that I need to write about. Lately I've had an overwhelming urge to write something about the way we feel we are treated by doctors and the medical profession in general.

I'm not doctor bashing; we have some wonderful doctors with us who understand CMT and work with us beautifully BUT there are some who fall into the category of insensitive, to say the least, and we pay for their lack of humanity.

About once a month I get a call from a woman who starts her telephone conversation just fine but after about two sentences she is reduced to tears. Usually she has just returned from the doctor or the lab where she has had tests done, most likely an electromyogram (EMG). She sobs those long heartbroken sobs that let you know that she feels as though she has been violated. This isn't a sexual thing, mind you, it is a self thing, a soul thing, a feeling of losing control over something that is being done to you that hurts and humiliates and no one cares.

As brutal as it is for some of us, needle EMGs are still ordered by some doctors to diagnose the irritability and function of muscles. These tests are diagnostic, and since there is no treatment or cure for CMT, they aren't instrumental in helping us. Some doctors ask for one every year or every other year. Remember it is your body and it is up to you if you want to put yourself through this or not. Sometimes you have to say no, but if it's your first time out, you won't know if it is going to really bother you or not. We find that the people with less muscle mass (mainly women) are the ones who really feel EMGs. Ask for a motor nerve conduction velocity (MNCV). It is done without needles and could be just what the doctor needs.

How to recover from something like this? Have a good cry if you can. I sat in the parking lot of the local hospital for 15 minutes sobbing almost uncontrollably before I could stop shaking and start the car to drive home. I truly felt violated, there is no other word for it.

To top it all off, when I went to another doctor, out of town, he told me he couldn't read the previously taken test and I had to have it all over again. This time my husband sat at the end of the bed and watched what happened. As the neurologist kept upping the current and I found I could no longer keep smiling I began to wonder why the doctor didn't quit. He didn't and when I was finished I was shaking so badly I could hardly move, had blood all over my new slacks and felt like a limp dishrag. Thank God, Ron was there to help me both physically and morally. I needed the moral support more than anything.

If crying isn't your way of letting it all out, try to make it home without falling apart. Take a nice pampering bath or shower, make yourself a cup of comforting tea or coffee and put some nice music on. Think about yourself, your body and that it really is yours, that you have it back and it is okay and will only get better as the experience wears off. Try to be as calm as you can, take nice deep breaths and comfort yourself, withdraw into yourself just for a little while. It takes time to mend from these experiences and you need that time all by yourself, even if it's only an hour away from the kids, the kitchen, the phone and the office. No one can violate your mind unless you let them and that's what counts. You'll be okay, but you have to know how to be okay, how to help yourself mend. If you have a good friend, talk it out while your hair is still wet from the shower. If you don't have a good friend who would understand, call me.

Another insult to our sensibilities is being made to feel we are alarmists and that our disease is nothing. I've been told many times that some doctors, and technicians, think "CMT is nothing," to put it in their words. Granted, compared with some of the muscular dystrophies and diseases like Friedrich's ataxia and ALS, we got off lightly, but never should anyone be denied their disease concerns because it isn't as bad as that of the next fellow.

We've also been told we have no pain, that we couldn't possibly have pain associated with CMT, until Dr. Hardy surveyed many hundreds of us and found that indeed there can be pain associated with CMT and that it is very real. No one should ever deny anyone their pain. Pain is a personal thing. It cannot be seen but to deny a person their pain is to deny them their very being.

The old pat on the shoulder by a doctor and being told that we have Charcot-Marie-Tooth disease or Peroneal Muscular Atrophy or Hereditary Motor and Sensory Neuropathy, whatever they know it as, it's nothing, just go home and live with it, isn't good enough. We need to know what is going to happen to us. The problem in most cases is that the doctors don't know. We stress that it is our job to teach them and to be our own experts. We say this for a reason. The medical profession can't be expected to know everything. There are thousands of rare diseases, ones that there simply isn't time to study in-depth in med school Ours is very prevalent, but, because it isn't life threatening and because it doesn't put many of us in wheelchairs, it isn't a priority with the medical profession. So, we have to know what's going on or we lose.

If a medical person poo-poos your CMT as being nothing, try not to get too upset. The situation isn't worth it. You have to be strong in yourself and your knowledge that you have to know and will find out. Also you know how you feel about various treatments, you know what drugs do to you, and you know how you feel when you no longer have control. You and I both know the apprehension we have concerning our well-being. It's only natural. We are only given one body and we only go round once. When our body starts to do things it shouldn't, we need to know why. For answers, find another doctor, one who understands CMT and tries to answer your concerns rather than dismiss them. We are developing a referral list just for this type of situation. Also, read your newsletters, keep them. I don't know how many times I'm asked the same questions over and over again when the answers are in the newsletters.

If any of your concerns can be addressed by writing to the heads of the departments at the hospitals or clinics you feel you've received intolerable treatment through, wait until you calm down; this is important as you'll lose your credibility if you sound hysterical, and then, by all means, write. Make sure you write to the head of the department or head of the hospital. No clinic or hospital wants to keep on an employee who is giving the hospital a bad reputation and the more complaints a health care institution receives about an individual, the sooner they will be investigated. Send a copy to the doctor in question and to the doctor who referred you to that person and make sure you note those copies sent on the original letter.

We are trying to ask the questions of the medical experts that we all want answered. Because we represent so many of you, we are attracting some very good doctors who are interested in CMT. Some of them, like most of those on our expanded advisory group, actually volunteer and are eager to do work on CMT. Thank heaven for these dedicated people and here's hoping that we'll find more of them who are willing to lighten our lives.

In the meantime, hang in there, the answers are coming. Be strong, play it smart, and always look out for number one, YOU.