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03-02-2012, 10:12 AM | #201 | ||
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I have almost no neuropathy in my hands and encouraging progress with my feet although they are still problematical. You can learn about MaxiEnergy at Oramune.com. My posts describing my particular journey through peripheral neuropathy are in this thread. I remain hopeful that I will be free from this curse in a short time. |
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03-04-2012, 03:06 PM | #202 | ||
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On VitB12, my result last May 2011 was 908 pg/ml (211-946), but you mentioned that there is no known toxicity on VB12 so I am taking now 5000mcg. Did you say that if my symptoms do not improve within 3 months, this means that it will not do much. One thing I notice when I started taking the Methycobalamin is that I dont get so tired as I used to. Though I still feel tired but I know that this tiredness is caused by the pain. |
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03-04-2012, 03:33 PM | #203 | ||
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I am glad that your symptoms are getting better. I see that you have been a member since November 2011, does that mean that you have been diagnosed of PN around that time or earlier? May I ask, what is the cause of your PN? I am sorry, you may have posted about your condition in the past but I did not read it. Thanks. |
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03-14-2012, 08:42 AM | #204 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Sorry I missed this. I'm taking pretty much what most folks here are taking, including yourself. I had a near-miraculous response to R-Lipoic - 48 hrs and no more burning/pins & needles. I take methyl B12. Tried Acetyl L Carnitine, but couldn't discern any difference after several months, so I stopped it ($). I take B5 (pantothenic acid) for a couple reasons, PN being one, and it helps the RLA (even though my PN is not diabetic). It stopped the residual shocks/needle jabs. http://www.diabeteslibrary.org/View....ntothenic_acid Started the stabilized RLA this month - no difference yet - may be too early to tell. NAC - been taking it for years - first because I used to take a lot of acetaminophen (NAC protects the liver), but still do because it's a very powerful anti-oxidant (like RLA). B-complex, Ester-C (can't tolerate ascorbic), D3 (1000IU/day), E (Tocomin - no idea why I take this except a doctor said I should several years ago due to my age & being male.) That's pretty much it for PN. Benfotiamine is on my list. Overall, I'd say I stopped my PN's progression when I began the B12 & RLA (or it may have been coincidental - that happens with some middle-age PN). Since then things have gotten a little better, but almost imperceptibly (which is another place the journal has helped). I also finished off an old scrip I had for amitriptyline, and I think that actually helped a lot (neurogenesis?), but I don't really have any valid medical reason to ask for any more. I stopped glucosamine/chondroitin/msm after taking it for years after seeing this: http://www.quackwatch.org/01Quackery...ucosamine.html Can't say it was doing anything anyway - some people (wife included) swear by it - can't hurt. I take some hormone supplements for adrenal fatigue/suppression from chronic pain, but that's whole 'nother ball-o-worms... http://neurotalk.psychcentral.com/thread156416.html They are working GREAT! N.B. I tried a little hot sauce & bleu cheese dressing on my chicken last night, and my feet burned for several hours afterward. Forgot I had an inflammation response to nightshades. Better this morning. Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | ger715 (03-14-2012) |
03-14-2012, 10:38 AM | #205 | ||
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Magnate
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Doc......As I previously mentioned, I am taking 100mg' of the Best Stabilized R-Lipoic Acid. Are you taking more than 100 mg's? After starting the R-lipoic, I began losing weight. I have lost about 10 -12 lbs. over a 8 mo. period. (Have not change my eating habits.) They do seem to make me a little hyper. Could be coincidence.
I read the info on the Pantothenic Acid (B5). Is this the brand you are using? Also, what is the dose you are taking? Again, thanks so much for your input. (Ger) Last edited by ger715; 03-14-2012 at 10:55 AM. |
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03-14-2012, 10:58 AM | #206 | ||
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NAC = ?
Thanks. |
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03-14-2012, 11:18 AM | #207 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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N-Acetyl Cysteine
http://en.wikipedia.org/wiki/Acetylcysteine http://www.webmd.com/vitamins-supple...TYL%20CYSTEINE http://www.raysahelian.com/acetylcysteine.html Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | Nervous (03-14-2012) |
03-14-2012, 11:36 AM | #208 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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I started on 100 mg/day of regular RLA. I tried 200 mg, but didn't notice any better effect, so I dropped back down to 100 mg. I bought a lot of the stuff on sale (cheap) and was trying to use it up before starting the stabilized type. Then I thought to take the stabilized in the morning, and the regular in the evenings (killing 2 birds, so to speak, but using the less powerful type in the evening in case it did cause agitation). That's where I am now (using up the last bottle of regular). I still have not noticed any agitation (or difference for that matter). Quote:
Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | ger715 (03-14-2012) |
04-15-2012, 11:08 AM | #209 | ||
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04-15-2012, 11:43 AM | #210 | |||
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Wisest Elder Ever
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Welcome to NeuroTalk:
No not yet, but we have as of now, 252 threads scattered on this forum about it. If you click on the main page... Peripheral Neuropathy at the top of any page on this forum, and go to the upper right where "search" is, type in CIDP into the search box. The search box only appears on the first page here. All the threads will be listed. I cannot link to a search, because it is time driven and the link expires. So you will have to do it. We've been here almost 6 yrs now and there are many things you can find with the search function. Many of the CIDP patients eventually get put on IVIG to see if it can halt progression. Many CIDP's are autoimmune as well, so treating the autoimmune can arrest progression. http://emedicine.medscape.com/article/1172965-overview CIDP is a more progressing and serious type of PN, because it can attack motor neurons as well as sensory. It is taken more seriously by doctors for this reason. Purely slow progressing sensory only PN is not treated in the same way. Sensory only is more common. edit to add.... I just saw your other post at our Introductions forum. If you were unconscious for a month? YOu could also have some brain damage, like stroke patients get. Central brain damage can also cause chronic pain. This is called central pain syndrome. http://en.wikipedia.org/wiki/Central_pain_syndrome If you have THIS I don't think IVIG would work as well.
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