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#1 | |||
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Member
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I think it is definitely a wait and see thing, and individual cases vary in their results. My mother had a trapped nerve in her neck released, but did not experience any improvement in pain. She still has it (the pain) over 10 years later.
That doesn't mean that your pain won't improve, as I think individual cases vary a lot. Got my fingers and toes crossed for you Raglet |
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#2 | |||
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Senior Member
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I would think at least 3-6 mos, if not longer - for
injured nerves (trapped) to heal. Sometimes it can take 3 or 4 years to recover at least 75%-85% of prior state. Injured nerves are very slow to regenerate. When they do, it is possible that new pathways are grown, to bypass any that may not heal properly. Expecting 100% recovery may be setting the bar a bit high. Check about supplements to help improve the healing process (esp B12).
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Bob B |
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#3 | |||
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Wisest Elder Ever
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Regarding blood levels of B6:
1) Studies have shown that in autistic patients, B6 can be elevated when NO vitamins are used. Quote:
http://www.ajcn.org/cgi/content/abstract/50/5/1059 If the red cells break open during the blood draw or later due to poor handling, there could be a false positive high reading. The only way to test this is to redo the test, and not use any supplement of any kind for many weeks before the blood sample is taken. If it remains high for no reason, that indicates either it is not being used by the body properly ..activated to pyridoxal, or is somehow a factitious reading. I searched the net this morning again, and this question comes up on many other sites, and the typical answer, is "don't know". If you stop all B6 and still have neuro symptoms, and a high reading in the blood serum, I'd consider using activated B6 called P5P. B6 is unusual because deficiency and excess gives similar symptoms, and this is very difficult to evaluate, if the testing procedure may be flawed.
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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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#4 | ||
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Junior Member
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Mrs. D, I was recently diagnosed with PN and I wanted to ask you about B6. I had been taking one multivitamin with 3 mg of B6, 2 calcium citrate supplements with 10 mg/tablet and one B50 supplement (periodically). Total B6 intake from supplements was 73 mg. My pyridoxine level was 47.4 ng/ml (ref range 5.0-30.0). I had significant peripheral neuropathy symptoms at that level. I stopped the B6 and most symptoms subsided within a couple of weeks. My current B6 level is 5.0 ng/ml and I am taking no supplements. I should add I still have an underlying mild neuropathy which my neurologist suspects is CMT. I don't have any neuropathic pain, just some spotty numbness in the feet. Everything I have read says I should be okay taking up to 100 mg of B6. Why am I different? I'd like to take some B6 just to get a little higher in the normal range. Do you recommend the P5P? By the way, I am a 60 year old male, otherwise in good health, very physically active.
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#5 | |||
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Wisest Elder Ever
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People vary in how they activate B6. The pyridoxine in standard vitamins is the inactive form --pyridoxine HCl. This is activated in the liver and blood cells to pyridoxal phosphate, which is the form the muscles use. If one does not metabolize this properly due to genetics or damage to the enzyme (some drugs block this conversion) the pyridoxine builds up. It is not known why it is not excreted properly either. For some reason autistic kids show elevations with no supplements. This is not understood either, at this time (I put that paper up here).
Not much is known about B6...I've searched for years to find usable information about it to post here. Not many doctors even test for it. The actual number of cases of high dose toxicity are very few and mostly gathered from the days when PMS treatments involved 500mg or more a day. There are a couple of papers on PubMed describing rare reactions to B6 doses in the 50-100mg range daily. But they are very few...less than 5-- I could even find. This problem is complicated by the fact that PN symptoms when B6 is low are the same as for when it is high. How can one tell which is the cause and which is the effect? Until someone gets funding to research this, all we have is anecdotal reports. However, Dr. Bruce Ames who researches mitochondrial issues, aging and cancer, has published his opinion, that people vary genetically in how they use the B vitamins and hence what works for one person may not work for another. B6 does not work alone in the nerves. B12 and folic acid work with it. CMT is a special case, and you'd have to check out their websites to see what they recommend for P5P type of B6. In general, none of the toxicity papers mention what type of B6 caused the problem. Some say pyridoxine. P5P is a special form, which was not common 10 yrs ago when I found it and started posting about it. I use it myself. Since those days, more people know about it, and it is even being investigated as a "heart drug" and the company doing so wants to take it off the OTC market so they can have exclusive rights to make money with it: This link has more information about this situation by Big Pharma: http://neurotalk.psychcentral.com/sh...ight=pyridoxal
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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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Junior Member
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Quote:
And of course now I have introduced the lumbar decompression surgery into the equation. It has been about 2 1/2 weeks since the surgery. The consensus here on the forum seems to be that I must be patient depending upon how badly the nerves were compressed (is a year a long enough time to be able to say whether it has helped or not?). I don't expect everything to just disappear but I do hope that I may get some relief and allow me to function better. |
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#7 | |||
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Wisest Elder Ever
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I will say...besides this being very confusing, and hard to understand...:
If you were "toxic" in B6 levels, and only had foot problems I would find that disturbing. Toxic responses in the body are mostly global, and other areas would be giving symptoms, not just the feet. I had severe neuropathy when I was 30 and after, that was due to hypothyroidism. My hands were just terrible and very painful and weak. When I had that fixed, much of my foot pain resolved (took almost a year tho) and my hands were better. I use P5P to improve my hand functions still today. Gardening and use of some tools, will set it off again if I am not careful. If neither of you have hand issues, or numbness in other parts of the body besides the feet, I'd wonder if the B6 is the only culprit. Logically you should have symptoms elsewhere if that B6 is elevated enough to cause damage.
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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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Junior Member
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Atltom--Your level of B6 was quite high. Maybe it takes longer to resolve. My toxicity was less than half of yours but I also had burning feet. It felt like I was walking on hot coals. My symptoms progressed within several weeks. I had loss of pin prick sensation, stocking and glove distribution, minor sensory loss (proprioception) in addition to the burning. I remember lying in bed one night about two weeks after stopping the B6 with the burning feet and when I woke up the next morning, the burning was gone and has never returned. That was about 8 months ago. I had my B6 tested about a month after stopping it and it was 12 ng/ml. My initial symptoms were in my arms and I still have some hand tremors after a year but they are getting better slowly. That also could be the Charcot-Marie Tooth neuropathy. Also, the numbness from the SFSN has taken a long time to resolve but hasn't been as troubling. Is there any reason you wouldn't want to test your B6 sooner than 6 months? I would think your levels would normalize sooner and that might be useful information to distinguish B6 from your spinal nerve symptoms.
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#9 | ||
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Grand Magnate
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Quote:
CMT is progressive no matter what you do. If you exercise too much (your body will tell you) you can exacerbate CMT symptoms. It perhaps would be in order to know for certain if in fact you do have CMT or something else going on.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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"Thanks for this!" says: | mrsD (12-18-2009) |
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#10 | ||
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Junior Member
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Thanks Kitt. I have an appointment with my neurologist again in February. I plan on asking for the genetic test at that time through Athena. When I saw him last, it wasn't a consultation so I didn't have much time to get details. He just said he suspects I have a heridetary peripheral neuropathy. I don't know which test would be appropriate, I only know I have a demyelinating neuropathy. My first EMG/NCV with a different neurologist indicated I had an axonal and possibly demyelinating neuropathy. So it's not clear to me right now which test to take. If you have any ideas I would be glad to get your input. I am assuming my neurologist is familiar with CMT but I don't know for sure. He is the head of neurology at the hospital I go to and he has been practicing for about 40 years. Believe me I am anxious to find out. Any help you can give from your experiences would be appreciated.
Jon |
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