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Old 11-19-2012, 02:58 PM
Thefarouk Thefarouk is offline
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Join Date: Oct 2012
Location: Pacific NorthWest
Posts: 16
10 yr Member
Thefarouk Thefarouk is offline
Junior Member
 
Join Date: Oct 2012
Location: Pacific NorthWest
Posts: 16
10 yr Member
Default more data and a possible clue!

Well after my doctor had to make a few unpleasant phone calls, finally got in to see the folks at UofW neurology center. Met the doc I saw while i was actually in the hospital, got more data and some hope.

The whole time, the theories around my PN have centered on my B12. Problem #1 - she did recommend B12 injections (weekly) post release from the hospital, but its only noted 1 place, and the pharmacy, my doctor and I all missed it. I should have been on B12 shots this whole time. Those will start soon as I can get to my doctors office. She was happy I was up to 303, but wants me much higher - over 500 (hey, where have I heard that number? )

She also did some tests (and we re-did them today, waiting on results) for co-factors to B12: specifically Methylmalonic Acid and homoscysteine. According to her, while my B12 was barely within range at the bottom end, both these cofactors were very high - which leads her to think this is still B12 related. If I understood correctly, it sounds like the enzymes my nerves need are created as part of the Krebbs cycle, and the high level of cofactors (i didnt get the actual numbers, but i will), is leading to polymylamic breakdown.

While I still clearly have neuropathy, the palpable tests were better - in the hospital i was having no physical reactions to reflex tests - now I have some, but insufficient reaction with slightly better results on the right side, slightly worse on the left.

Hopefully this theory will pan out, and kicking those B12 levels way up will finally knock this thing. If so, though, the question becomes why are those cofactors so high/why is my B12 so low? Could it be related to the rapid weight loss?

/Bob
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