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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 antonina
The latest B12 result in June was in the low 400's so I've been much more religious about taking it every day. I take 50,000 IU of Vitamin D weekly so altho I didn't have a recent test for it, I assume it's in a good range.
I'm definitely going to schedule an MRI in the next couple of weeks. As for CMT, I will ask for a test, although I wonder if I could have it given my advanced age (remember, I'm on Medicare). I thought CMT is primarily hereditary and if so, wouldn't it have shown up before middle/old age?
The chemo, which ended in 1999, was definitely the catalyst for the disability. But I firmly believe that there is more than PN involved. My heartfelt wish is to have a complete workup @ Mayo but as I mentioned in earlier posts, they felt they could not offer me anything of value since I've had this for more than 10 years.
I am in the process of trying to get an app't w/ a neuro whose reputation is first- rate. He is supposed to call me today to evaluate if he's the right doc for my sx. (I guess he can pick & choose lucky patients).
Yesterday I spoke w/ a Johns Hopkins intake person. She emailed me what JH requires in terms of records, written reports, etc. Doesn't sound too onerous. If I don't get anywhere with neuros here, I am psyched to be seen there.
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Yes, CMT aka Hereditary Motor Sensory Neuropathy (HMSN) is hereditary. There are many types of it and they are finding more all the time.
Symptoms can become evident when you are young, old, or in-between. Or they may never be that evident but you can still pass it on. There are "rare" mutations (spontaneous) but this is rare.
There are 22 + types of CMT that they can now test for. There are 50 types identified so far and there is no end in sight. If you do have testing done and it shows that you do not have CMT (at least for the types that they can now test for) does not mean that you do not have it.
Testing is very expensive if you have to have the whole panel of tests done. I believe Medicare does pay for the testing.
As far as chemotherapy, Vinicristine is one that a CMTer should never have. It can raise havoc. Even people in the general population can have big time trouble with it. But, as I said, someone with CMT should never have Vinicristine.
Hope you find the answers.
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Kitt
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"It is what it is."
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