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04-13-2017, 07:27 AM | #1 | |||
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Wisest Elder Ever
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That is promising! I hope he has something further to suggest for you.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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04-13-2017, 07:15 PM | #2 | |||
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Member
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Quote:
He advised me to go to my doctor and get the biotinidase enzyme activity test. That's the only sure way to know my level of deficiency. Whether or not it could factor in to my neuropathy is a big unknown, but he'd be very interested in knowing how deficient I am and wants me to let him know. Like you mentioned, how would anyone ever know they are? Only babies are tested, so the number of adults who ever find out they're deficient are just those 2% - 3% who have children with another 2% to 3% who then go on and incur that 25% chance of having a child born with 2 copies of the variant. It's obviously a very small number. So I made an appointment with my internist for next Wednesday, and am hoping she'll order the test. With regard to this acidosis thing, is that something could be tested for. After a quick Google, it looks like there might be a test? I'm still poking around. Forgot. I flared out of nowhere yesterday after feeling pretty good for several days. Discovered something...the only salad dressing I ever buy has MSG in it. Last edited by janieg; 04-13-2017 at 09:55 PM. |
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"Thanks for this!" says: | Lara (12-28-2022), madisongrrl (04-19-2017) |
04-19-2017, 08:36 PM | #3 | |||
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Member
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I saw my doc today. I think she thought I was completely off my rocker until I told her this biotinidase expert called me from Detroit. Not surprisingly, she didn't know what biotinidase was. She Googled it while I was with her and pulled up one article or research report after another written by this doctor in Detroit. I think it gave me credibility.
She said she was happy to order the biotinidase test, but warned me, "I'll have no idea what to do with the results." I assured her that I knew that, and that hopefully Dr. Wolf would be able to offer some guidance. She was happy to hear that, but then also said that worst case, she would make some calls and see if she couldn't find someone to make sense of it. Once again I'm in that "please give me bad test results" place. |
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"Thanks for this!" says: | madisongrrl (04-24-2017), mrsD (04-20-2017) |
02-16-2018, 06:36 PM | #4 | ||
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N/A
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I just took the time to read a LOT of this thread and a LOT of very very good info here..thanks all.
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02-24-2019, 12:27 PM | #5 | ||
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Junior Member
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02-24-2019, 02:55 PM | #6 | ||
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Junior Member
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Does anyone remember a poster on this forum who had self-trialed Pirenzepine for a period of time?
I've tried searching for the posts but nothing comes up. I don't think I imagined it . . . Thanks Paul |
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