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Old 11-16-2013, 06:05 PM
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ElaineD ElaineD is offline
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Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
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ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
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en bloc: I told my Neuro that I would be on IgG by the time he wanted to run the tests.

He said that I should take the tests at the end of an infusion period.

I agree that the IgG will still be in my system! But I think most of what he is looking for has to do with toxins.

I don't know what tests he's running. I'm not the least bit optimistic about finding anything. I think he just wants to cover every base in testing.

MrsD. if it IS CMT, I guess it is what it is, with no cure. Would it appear suddenly and then not have any progression? I went from perfectly FINE to profound neuropathy in about a year and a half. (2009) With no progression since then. I guess genetic testing is in order. My Immunologist has run some genetic testing, but it was mainly around my CVID.

I tried Jarrow Formula Methyl B-12 for about 18 months, at 45,000 mcg/day. Hoping that I would see some improvement.

In fact, I would say my foot drop is worse. Well, I gave it a good try.
And it seems that my Neurologist has NO interest in B-12 treatments. I had thought maybe injections would be more effective.

Since I had a 95% block of my LAD coronary artery ('the widow maker) that was cleared and stented in 1999, I feel that the past 14 years are 'gravy' and tho' they have been filled with one weird condition after another, I have had the joy of many years with grandchildren and friends.

So I think all of this is manageable, in one way or another.

Hugs, ElaineD
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