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Old 12-15-2013, 08:23 PM #3
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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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As always, you have the best words, MrsD.

I did try very large doses of Methyl b-12, for a year and a half, every single day. No change did I notice, and no change showed up on the test in November.

I was really hopeful. But of course, it can only help certain types of neuropathy, and I don't know exactly what kind mine is! Not the kind that is helped by rather costly large doses of Methyl-B-12. Now I just take what I have as a supplement daily.

My neurologist really hopes that the copper supplement might make a difference, or finding Celiac's. He's seen people's lives revolutionized by discovering Celiac's Disease and then making the necessary dietary changes.

I'm rooting for him. I really am. I'm hopeful, but not relying on him to find a cause/cure.

I have family here, grandchildren, and a grand beagle. Friends, book groups, activities I enjoy. It's just that slightly nagging feeling that I should be out and about doing things. We worked for causes we support, and my husband did footwork, while I did phone bank work, which is equally important.

I'm finding ways to be myself. It's just that my husband is remodeling the entire house, keeping the yard, playing golf, running with the grandkids…..

My granddaughter can't comprehend that Grandpa is older than Grandma, since he is so active, and she can't do much!

Fortunately at 5'8" i don't get run down when I AM out and about, even without a walking stick.

Mostly it is just the misperceptions that always throw me, the seeing something, thinking I am going to step over it, and then NOT stepping over it. Message relayed, garbled, and not properly executed!

The other odd thing is that I look about 15 years younger than my age of 71. So even my doctors have to verbally remind themselves that they are dealing with a much older person. I look the picture of health, Mrs.D

Well, I guess that's better than looking as bad as I feel on occasion.

I start on IVIG next Thursday. I couldn't manage the subcutaneous infusions weekly, since I had a negative reaction every time. My immunologist is hoping that I'll just have one negative reaction a month, and then have some recovery time in between with IVIG. I liked the SubQ, don't mind the needles, and of course I can't go running around anyway, so I could sit easily while the infusion took a couple of hours.

I had retired early due to severe coronary artery disease, at 58. I didn't get any of the ensuing auto immune conditions until after that…..so I'm 'lucky'. I always say: My osteo arthritis is the most painful, my PN the most disabling, and my CAD will probably take me out when my time is up! The autoimmune conditions and the immune deficiency are just add ons!

Hugs, Elaine
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