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#1 | ||
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Member
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Thank you for your thoughtful post. I quoted the above because it is a good reminder. My PN has not been "cured" over the time that I have been taking supplements, but it is quite a bit better in many regards, and, considering that my doctors wrote me off as hopeless and incurable-untreatable, I know that I am making meaningful progress. |
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"Thanks for this!" says: | Mark56 (01-19-2013) |
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#2 | ||
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Member
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It's my understanding in all honesty from those who have PN, as well as doctors that are experts in the field, that PN DOES improve - MANY times to the point were it is truly healed or fades to the point where it doesn't affect your quality of life much. If it wasn't for the flare-ups I have every month - I would already be at that level. ...Either one would be fine with me. But echoing your point here: even if PN is permanent for some it does NOT mean that your level of suffering is. By far, most people WILL get better and it's best to remember this. I also pasted a "Positive" link below to a guy who had a very similar situation to mine, but he took the drug 3 weeks longer than I did. It's the response from the doctor at the bottom that's very interesting here, as he explains that PN nerve damage CAN indeed heal. ...Happy healing & God Bless. ![]() http://www.justanswer.com/neurology/...cin-500mg.html |
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"Thanks for this!" says: | Mark56 (01-19-2013) |
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#3 | ||
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Elder
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I have PN caused by two ankle surgeries. Yes it did improve with the vitamines that were mentioned in these posts. I didn't think it would get better, and was very skeptical of improvement. B12 shots, CoQ10, Bcomplex, all are helping. I am amazed. I wish all of you the best. ginnie
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"Thanks for this!" says: | Mark56 (01-19-2013) |
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#4 | ||
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New Member
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"Thanks for this!" says: | ginnie (01-28-2013) |
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#5 | |||
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Wisest Elder Ever
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It takes 200mg-500mg a day for a LONG time to give a few people with "toxicity". The actual numbers of those reported are very small and go back to when 500mg or more a day were given as a treatment for PMS in women. more here: https://docs.google.com/viewer?a=v&q...houNfuv26eKLwg Most doctors really know very little about vitamin levels. They don't even know that pyridoxine is not the active form of B6.
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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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#6 | ||
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I would still be careful about B6 toxicity. I would advise testing before taking and then testing again a few months after taking to watch levels. My doctors put me on B6 right away without testing and my levels shot up through the roof, probably worsening my PN. I would have kept taking the B6 if I hadn't listened to my own gut feeling and make them test me (after asking many times) and getting my test results myself to check (they never noticed this, even after they received the lab results back - I had to point it out to them). It is a good idea to keep an eye on your levels because your body might not be eliminating it as expected. I have now been off it for four months and my body is still not back to normal levels. |
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#7 | |||
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Wisest Elder Ever
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The levels and ranges were designed to reflect people NOT taking supplements. It is only to be expected that taking something everyday would shift those levels to a different reading.
What is missing from our medical community is the information about what is serious for those taking "something" compared to someone not. All we have to go on today, is the patient's information about how they "feel". If something doesn't agree with you, don't take it. Then there is the testing itself. If the red cells burst in the sample and spill their contents then artificially high readings can result. But they do not reflect the true serum levels. There are now testing labs that only measure intracellular levels, so that mistakes cannot happen as often.
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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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#8 | |||
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Grand Magnate
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Thrilled for you strides in the direction of better life are yours ANYWAY! Mark56 ![]() ![]() |
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#9 | ||
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Junior Member
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I haven't been on here for a long time. I got very sick last spring with a whole host of seemingly unrelated symptoms. I was nauseated, I had numbness and tingling in my hands & feet, I had head pain, hand tremors, palpitations and tinnitus.
I had been to two physiatrists, my family doctor, a chiropractor and several PT's. I had a brain scan, MRI of neck and back, nerve conduction tests, blood work and was eventually referred to a rheumatologist. Everything came back normal - except all the long standing problems I knew I had with my back. Two trips to the ER showed that I had low potassium. That was addressed with potassium IV and supplements. The heart palpitations went away. Another trip for the tremors showed that my TSH was very low (my T3 and T4 were normal). Apparently the tsh had been dropping for about 2 years. I've been on synthroid for over 30 years. I had high anxiety about all my symptoms and was told to see a therapist and take an antidepressant. Neither worked and I stopped both. It was after I saw my endocrinologist and got the right dosage of synthroid that my symptoms went away. As I got healthier my anxiety lessened. Now, several months on my proper dose and the numbness and tingling are gone. These are not typical symptoms of low tsh but I had them. It was a catch 22. I didn't feel well, the anxiety went up, and that definitely adds to the symptoms. Even now, it will increase my tinniutus. So, no supplements. Nothing more than adjusting my synthroid dosage. Now my back problems - which are a train wreck - are another problem. But I will say that PT has never helped. I exercise. And try to eat right. I think that helps. So, numbness and tingling can often have an obscure reason. |
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#10 | ||
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Member
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I'm not sure what your circumstance was to begin with or how you actually got PN, but I'm very glad you are feeling better now.
![]() I was thinking of adding Alpha Lipoic Acid to my vitamin regiment but don't know the concerns or dangers of it just yet. I have to research a whole lot before I try something out. But I heard that Alpha Lipoic Acid was one of the best antioxidants that really helps to not only relieve PN pains, but actually heals it by catering and feeding the mitochondrial damage of nerves and such. Does anyone here take Alpha Lipoic Acid for neuropathy? And if so, please let me know what it has done for you, as well if there are any side effects from it. ![]() |
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Thread | Forum | |||
paraneoplastic/SF-non lenght dependent neuropathy/demyelinating neuropathy | Peripheral Neuropathy | |||
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