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Old 09-29-2009, 09:15 AM
antonina antonina is offline
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Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
15 yr Member
antonina antonina is offline
Member
 
Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
15 yr Member
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Originally Posted by antonina View Post
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.
As for toxins, it's possible there are environmental things going on but I can't think of any offhand. I should look @ Liza Jane's chart for toxin testing. I can also try a gluten-free trial run since altho the rheumy said no Celiac, that doesn't rule out gluten intolerance and boy, is my diet gluten-loaded!!
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