Myelin
How many people know what "myelin" is? Very few, from my experience. However, in the CMT world it's a very important thing. This is something that took me two years to really understand, because I couldn't find any easy-to-understand explanations, so I'm going to write one for anything else who might be having trouble with this. (Note: This is CMT1A I'm going to explain) Myelin is part protein, part fat, and acts as an insulator for your nerves. When signals are traveling through your nerves, telling everything what to do and all of that happy stuff, myelin makes it so that the signals don't "leak out". This is where CMT causes trouble, and things get a little more complicated. On "chromosome 17" there is a gene called PMP-22 -- this is what makes myelin. You get one of these (the chromosome) from each parent, but people with CMT1A have a double of one of them. (so they have three, instead of the normal two) This causes more problems then you would expect. You are then making too much myelin. This causes the myelin "sheath" (layer) to not lay properly on your nerves, so some areas can literally be bare.
posted by Char @ 7:07 PM
6 comments
6 Comments:
Thanks for blogging about CMT. I will be back to read more.
Hey powergirl, glad you found me - hope to see you here again :)
Thanks for the Myelin information. Maybe this is also the cause for the tingling feet that doctors label nuropathy? When I was tested for this the technical person said he was measureing the speed that electrical impulses traveled doun my leg nerves and he could detect that they had slowed down. This seemed to confirm that I had nuropathy. He also mentioned that I would not find a treatment easily that would work. He was right. Lucky for me it is only an irritant so far.
It is great to read your CMT Blog and I may go look for a nuropathy blog now that I have seen your CMT Blog.
PapaJim,
That sounds very possible to me. I'm sure there are numerous things that could make it so your myelin causes problems for you.
You should look more into it for sure.
I read up more and there are definitely tons of things that can cause peripheral neuropathy.
Also, this sentence that you wrote: "When I was tested for this the technical person said he was measureing the speed that electrical impulses traveled down my leg nerves and he could detect that they had slowed down."
Sounds very much like myelin. Because of my myelin problems my electrical impulses travel at about 1/2 the speed of a "normal person".
Char,
I wish I had been more careful to collect the test names and information. I did go to a nerve speciallist who checked my blood and urine for lots of things and could find no imbalance of chemicals to treat. He offered me Neurontin which I took for s while but did not see any improvement. The report may be in a file somewhere. I seem stable enough for now. Walking is OK with inserts and running shoes.
The inserts are for the ball of my foot which needs a bump for preventing the feeling like a marble is under my foot. I think this is called pronation .
papajim
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