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Grand Magnate
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Join Date: Aug 2006
Posts: 4,440
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Grand Magnate
Join Date: Aug 2006
Posts: 4,440
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Quote:
Originally Posted by raina
Yes, my father (85)has PN and had pain but is now numb below his knees, he can walk but has to be careful and uses a cane most of the time, he also has a recliner that has a motorized lift so he can get out of it. My Mom had hammer toes, high arches and thin ankles and calves and balance problems(as do I)
but no pain or numbness and several siblings have PN foot pain and one has thin calves. I'm the only one who has muscle atrophy. Until my doctor visit we had never dreamed it was a hereditary neuropathy....We thought it was common to have PN pain. We have a lot of autoimmune disease in the family too and our sense of 'normal' is a little off as we all deal with pain and some level of disability.
Kitt, how do I know what is too much exercise? I'm only doing a few minutes a day but my shoulder pain never lets up even with the vicodin. I usually go unitl I can't because of pain or exhaustion. I don't want to give up anything that I can still do, like take care of grandchildren. Are there any good web sites I'm missing for information? thanks Raina
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Hi Raina, From what you have said about your family, if it would indeed by a type of CMT it appears to more than likely have come from your mother and her side of the family. It could be the most common type of CMT which is CMT1A. This is if it is CMT at all.
You have seen an expert neurologist as far as CMT goes. You have probably read this site concerning Dr. Dyke.
http://mayoresearch.mayo.edu/mayo/re...ff/dyck_pj.cfm
If you had EMG/NCV testing, that alone could possibly determine if it is CMT1 or CMT2. It would not give the subtype though. DNA blood testing is available thru http://www.athenadiagnostics.com It is very expensive if they have to do the whole panel of tests. They do have a plan to help with the $$ if your insurance would not pay. But, again, if you only tested for CMT1A that would be less expensive. I'm sure Dr. Dyck knows about this.
There are Ascorbic Acid (Vitamin C) trials going on around the country. And also in other countries. So far there hasn't been much success. There is also much research going on that is funded by the MDA and also by the CMTA. So they are always doing research and trying to find a cure/treatment for CMT. On average it takes three to five years to develop a treatment for CMT1A (that's what they are working on) $10 million to move a drug thru the process. Then it is years and millions more to bring it to the marketplace. Having said that, it will be awhile before anything comes of it. Some of this is due to the fact that pharmaceutical companies aren't getting involved in the development of drugs for rare or orphan diseases such as CMT. CMT affects fewer than 200,000 people in the United States. Of course, it is misdiagnosed as well.
There is a medical alert list for those with CMT.
http://www.charcot-marie-tooth.org/med_alert.php
You need to be cautious as to what medications you take if you have CMT.
There is no magic bullet as far as treatment for CMT. Eat healthy, avoid stress, exercise within reason - your body will tell you - just take care of yourself. You absolutely do not want to take too much Vitamin B6. It can do damage to a CMTer. How much would more than likely depend upon where you are with symptoms. But, it can and does do damage. And just because they are doing trials with Vitamin C, you do not want to take too much of that either as in big doses, it is a drug. You also have to take into account how much vitamins you are getting thru your diet. If you eat healthy, it may be all that you need.
If indeed you do get information that you do have CMT, it would be the type that is in the family. In other words, if your Mom has it then that would be the same type. And remember that CMT symptoms vary greatly even within the same family.
You also say that you go on doing things until you can't because of pain and exhaustion. This tells me, if you have CMT, that you are pushing yourself way too much. There is a time when you do have to give things up or limit them whether we want to or not. Believe me, I know.
I hope you get a firm diagnosis soon so that you know what you are dealing with. Take care.
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Kitt
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"It is what it is."
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