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#1 | ||
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Junior Member
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I've been lurking here and I thought it might be time to introduce myself. I'm 48 married and the father of two beautiful young kids, and until recently very active cycling, surfing and windsurfing.
I'm not sure when I developed foot problems, as I badly injured my left foot when I was young and it had always been a bit numb due to subsequent nerve damage. I think about 18 months ago I started having right foot metatarsal pain and the beginning of some numbness. I saw several podiatrists with limited success. Recently the numbness and pain have become more extreme and the pain is affecting my ability to stand and walk for long periods. Like Shezian I'm quite nervous and worried about what the future holds, I'm also from Australia. I've ordered the full catalogue of supplements to try as recommended by Wing42, his early symptoms sound very similar to mine. I'm also now planning to see and doctor and a neuro. On the positive side I have found some great information on this site, and I took great encouragement from a post by Wing42 about "Reversal or improvment of your PN!! (success story's)" (towards the end of the page). I wonder what happened to him as he appears to have disappeared from the forum. As with many others, I find mrsD's posts very helpful. I'm trying to focus on the positives, which the internet makes hard at times as there seems to be plenty of not so good stories. For now its a case of wait and see and to give my body every chance to deal with this problem. |
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#2 | |||
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Wisest Elder Ever
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I have a few suggestions for you about your supplements as listed on that thread. Since then we have learned many new things.
1). SAMe is not really necessary for PN. It does help with mood and arthritis issues, should you have them. You don't need to start with it, since you will be taking lots of B vitamins. 2) Alpha lipoic acid has to be done in very high doses to work. The new R-lipoic stabilized is more efficient and only requires 100mg a day. Not all R-lipoic is STABILIZED..meaning water soluble so read labels carefully. Also it is not available locally commonly and will have to be purchased online. 3) Take the METHYLB12 if possible, and always on an empty stomach. The dietary suggestions are good, with the addition of my experience. Avoid MSG in processed foods and Asian cooking. MSG is a huge trigger for pain. Some people are allergic to nightshade veggies, and they can cause burning in some. Potatoes, tomatoes, various peppers and eggplant. Gluten from wheat and rye also is a problem for some. So doing an elimination diet may reveal you have some intolerances. Taking too much B6 and synthetic folic acid, is hard on some people. There are B-complexes with less than 50mg and you may want to start with them. Not all vitamins work for all PNs. If you have drug damage or chemo damage, (DNA damage) concentrating on Acetyl Carnitine starting at 500mg a day and working up to 2 grams may be useful. CoQ-10, an aqueous improved solubility form can work with it well.... 100mg a day of the improved form or 300mg a day of the old oil cap. These two things are the most expensive. The R-lipoic is also helpful for damaged mitochondria. Systemic PN moving to the hands from the feet, can be due to thyroid functions slowing down, impaired glucose tolerance with some LOWs happening, or food intolerances. I'd avoid vaccines for a while, in case those are triggering you. Check your daily activities...solvents, gardening pesticides, or chemicals may be triggering you--even frequent dry cleaning of clothes. Have you been checked for MGUS? These proteins create sluggish blood in the tiny blood vessels, and should be considered when other things fail to work. This is just an overview. There are many causes of PN... some are metabolic, and some environmental. If you continue a drug like statins or some antibiotics, supplements are not going to work much 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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#3 | ||
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Junior Member
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Quote:
I ordered some SAMe so I assume there's no harm in taking it. What is MGUS? |
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#4 | |||
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Wisest Elder Ever
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MGUS= This is when the white cells make too many antibodies, and they thicken and clog up the blood so it cannot move thru small capillaries well. MGUS if you have it is for life.
http://www.mayoclinic.com/health/mon...opathy/DS00870 While the sites say it is mostly "harmless"... people coming to this forum with it have significant PN symptoms. Some patients with MGUS move on to develop Multiple Myeloma in later years. Another gammopathy is cryoglobulemia, which are proteins that freeze up in the blood when it is cold out. So symptoms with it are more pronounced in cold climates. Some of these patients move to warm locations for comfort. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001567/ Both of these conditions, lead to nerve symptoms in feet and hands because nutrients and oxygen cannot get there well, and byproducts of cellular respiration cannot get out. So the nerves act up. Doctors typically do not test for these conditions regularly. Starting with SAMe you should do 200mg a day for at least a month. I ended up at 600mg a day for several years for my arthritis. It did nothing for my PN however. Take in the morning on an empty stomach and be aware that it may cause anxiety at first or insomnia. This can be controlled by reducing dosing to every other day for a while, or taking less per day. I hope your SAMe is blister packaged. It is very unstable exposed to air and moisture. Discount places may not sell it this way, to save money. I only use brand name NatureMade for this reason. Do not use SAMe if you take antidepressants.
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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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#5 | ||
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Junior Member
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Living in Australia I have ordered all my supplements from the US. It's amazing they get here quicker and cheaper than if I order locally.
I think I'll skip the SAMe, I don't want any sleep trouble and I'm already worried so don't want something that ramps up anxiety. |
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