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10-16-2012, 02:26 PM | #1 | ||
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Junior Member
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Thanks MrsD for the info.
Not quite sure how to interpret the motor question - i have enough leg strength to walk without a walker, albeit with falling risk because of my balance, and I weigh 430 pounds - so strength wise, I seem ok. If I look at my limbs I can make them do what I want - but the balance that enables walking without thinking about it eludes me. I'll ask my Dr about my B12 levels. Yes I meant PN - was probably thinking too much about the exercises (PE) - I have read that one of the keys to successful recovery is to keep using those muscles, so I'm trying to do everything I can. As to a trigger, we could never identify one. They literally told me they have no idea why this hit me, and that often that is the case. The thing that causes this theory (B12) to make any sense to me is because of the radical lifestyle changes the prior few months. I went from being a 14 year alcoholic, ending mid-may of this year, after my best friend had to be put down and it got me thinking about life not being forever, and the things that being an obese drunk were keeping me from. So I went from someone having 12-15 beers a night, to having 0-1. I also cut out almost all 'bad' food (highly processed, canned items, prepared meals, fatty cheeses) and switched to a less (not zero) carb, higher protein, low fat diet. I get between 1000-2000 cals/day and have taken off over 125 pounds. The thinking was I made so many changes so quickly, I could have screwed up my B12. No cholesteral meds, my last overall colesteral was 137. CIDP? IVIG? Researching now... /Bob |
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10-16-2012, 03:18 PM | #2 | ||
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Junior Member
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CIDP? IVIG? - ok read up on that.
You may be onto something there. When they did the spinal tap they only told me they were looking for signs of a virus, or similar - nothing about antibodies. Also, they did not do an EMG, nor said nothing about a nerve biopsy. I do not have any of the facial/voice/breathing symptoms, but have every hand/leg one I found - describes my condition to a T. I'm going to take this info to my Dr next visit (next week) and demand to know why these were not considered - I've already have a pending question out to him about both outpatient OT/PT and whether we've come to the time to consult a real PN specialist because the team at UofW medical center suck. /Bob |
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10-16-2012, 03:38 PM | #3 | |||
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Wisest Elder Ever
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When people lose weight very quickly, there can be a low Omega-3 situation... it is nicknamed slimmer's paralysis.
Not enough Omega-3 fats in the food you eat so you cannot fix damage to nerve sheaths...with are lipid based. There is a thread here from a fellow who stopped drinking and recovered his nerve functions ...here it is: http://neurotalk.psychcentral.com/thread104096.html Vitamin B1 is the most critical after the B12. Benfotiamine form of it is better than the old original thiamine. When you ask for the B12 test, also get a Vit D test at the same time. Bring both number results here so we can see them. At least you should be on a B-complex-50mg... that is the typical treatment for alcohol withdrawal. Have you had nerve conduction studies to see if you have axonal problems? Another thing that can happen is that heavy metals or toxins that are stored in fats, can be released quickly when you loose fat stores in a short time. I'd get tested for arsenic, mercury, lead, and cadmium if you can. Also, I'll fix that title then.
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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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10-16-2012, 06:23 PM | #4 | |||
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Great advice was given as usual from Mrs. D. Great you are losing weight. I hope you can get your tests and I agree, get quality Omega 3 for myelin, add Benfotiamne and B12. There are other great supplements also including antioxidents that are needed by the nerves.
Recovery can take a while, great you are here. SO much good advice. I know you said you have a good diet and are not diabetic, but I have had wonderful results with lowering sugar to almost nothing and the same with simple carbs like rice, pasta, bread, potatoes.. My blood sugar is great, but our nerves do not like spikes and lows. Keeping glucose level is very important. I even take mine at home so I know how just a few potatoes, rice etc can make the level high. There is a book called "Minding my Mitochondria" that talks about nerves, mitochondria and diet. Great book. I eat no gluten also. There are so many things we can do to feel better and I hope you will very soon!
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10-16-2012, 10:34 PM | #5 | ||
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Senior Member
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I had to go to a lab and order correct LIVE B12 blood tests on my own since my doctor did not offer the correct test. Most doctors are behind on correct information on B12 so educate yourself completely and don't rely on him.
You care more about you... knowledge is power. I am learning to investigate everything MYSELF and not just rely on a "normal" test or what a dr feels is unimportant. I have stopped being in the passenger seat and I am now driving. good luck! This place and these people are amazing! |
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"Thanks for this!" says: | mrsD (10-17-2012) |
10-17-2012, 12:37 PM | #6 | ||
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Junior Member
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Thank you everyoe for the suggestions and encouragements... My next dr visit is next tuesday - i should have more answers then.
I take it due to lack of reply, that there are no numbers/study on percentage of those who get a full recovery, a partial recovery, and no recovery? I'd really like to know the odds and i dont trust what my doctors are saying now since they keep changing their story. /Bob |
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10-17-2012, 01:01 PM | #7 | |||
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Wisest Elder Ever
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It is difficult to predict.
Fast onset PNs typically are blamed on viral infections. They can come on from poorly cooked chicken and other foods, because of a bacteria called Campylobacter. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88896/ You really need conduction tests to see what is going on with you. Don't take the B12 for a few days before your tests. And get the Vit D test too. Might as well get those out of the way. Good luck at your doctor's appointment.
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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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