Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi Ann and welcome! I am also 55, but was diagnosed as a kid. As for the burning feet - I've had this off and on since I was 7. Since it is not a constant burning, some of the things I do are: 1) change shoes often 2) don't wear socks with shoes 3) use ice packs, or stand on the tile floors 4) have used something called Biofreeze (there are similiar products out too) 5) massage with a cool lotion and stretching of foot muscles 6) in the garden, often use the hose to put cold water on my feet Thanks so much for introducing yourself. I know you'll enjoy our community. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hello Ann, I also have problems with meds..I found a doctor that does complimentary and traditional meds as well...Things aren't perfect but I feel better then I have for a long time.I think with all the other meds I was getting,I think it was killing me! For real! I my body was getting toxic.......Welcome to the group! I have CMT ..in a wheelchair,and I'm 67. Geri in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi Ann, Welcome to the group! I'm 44 yrs old. My CMT1A diagnosis came in about 2 years ago. It was quite a relief to finally understand why I was having so many problems. I too have burning feet. I have constant mild to moderate burning, which extends above my ankles. When I do too much, this turns into severe burning accompanied by sharp shooting pains. This happens when I stand too long in one place, i.e. standing in line at a store. To avoid severe episodes, I avoid standing for more than a couple of minutes at a time and I use a scooter whenever possible when I leave home. I have protective rubberized mats in the kitchen and a chair in the bathroom & shower. I recently stood too long by mistake. I've been suffering immense pain for days. I feel as if my feet were beaten with a rod. The burning pain is severe and constant. The sharp jabbing pains are frequent, running through all the little bones in my feet, ankles, and lower legs. It feels like I'm stepping on glass. The nerves in my entire body are affected, i.e. trying to take a shower feels like hot water on a bad sunburn from the top of my head to my toes. The only thing I've found that really helps take the edge off is Vicodin. I can't take a lot of Vicodin, due to how it makes me feel, so I take just 1/4 to 1/2 pill a couple of times a day when I need it. Everyone is different, but many with CMT are sensitive to these meds, so just a little may go a long way for you as well, if you aren't allergic. Also, I've been wearing my tennis shoes to walk to the bathroom. Typically, I just wear socks around the house, but the supportive shoes are helping. I'm thinking about trying Crocs. Others have mentioned they like these and they would be easier to get on. I too use Methadone (low dose). I recently stopped using it, after reading about a possible link between Methadone and sudden cardiac arrest. (A possible link that's being researched further.) I have heart symptoms and breathing difficulties, so reading this scared me and I stopped the Methadone. After it was out of my system, I couldn't tolerate the increased pain, so I decided to continue taking it. I am, however, getting additional testing done for my heart. Here's the information, in case you're interested... Possible link...rare ventricular arrhythmia, known as torsade de pointes. http://www.sciencedaily.com/releases/2008/01/080109173744.htm Methadone helps my overall body pain level, but it doesn't control these severe episodes. I'm also on Neurontin and that doesn't help severe leg/foot episodes either. The combo, however, with the occasional slice of Vicodin helps me cope. I also have Lidoderm patches, but I've never tried that on my feet. The thought just occurred to me as I was writing this. Perhaps I should try it. Do your feet get purple? (Mine get deep purple, especially my toes.) If so, it's very important to keep them warm at all times. To keep feet warm and protect fragile nerves, ice packs should not be used. My neurologist recommends always wearing socks (cotton), but the socks should not be binding or tight. Soaking in warm baths or using foot warming devices may help, with extra care not to get too hot. Supportive shoes that aren't too tight are important, so they don't cut off blood flow. Also, not crossing feet or even ankles is very important. (This one is very difficult to follow, especially for us women, but if you have purple feet, watch how much better they look when your legs or ankles are uncrossed vs. crossed. The difference was enough to convince me to stop crossing.) I also use a foot rest when I sit at the desk, to take the pressure off the back of the legs and avoid reducing blood flow to feet and irritating nerves in back of legs. IMHO...even if your feet aren't purple yet, I think the above is important for those of us with fragile nerve endings in our feet. Nerves & tissue lost can never come back, at least not until there is a cure for CMT. So we need to be as careful with our fragile feet as diabetics are told to be with theirs! Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Thanks ! DDI = hair elements test from doctor's data incorporated. My son doesn't have amalgam dental fillings, he doesn't like much sweets, eats mostly fruit instead of sweets. He has very nice and healthy teeth and is already getting probiotics. I just oploaded his test results and hope that someone will give me some good advice how to get started. Ann > > > > Hi, > Hi Ann, > Welcome to the list. Was it a DDI hair elements test? Please educate yourself on safe chelation because some DAN! docs use an unsafe protocol. Does your son have ANY mercury amalgam dental filllings? Is so, those will need to be safely removed according to proper protocol before he can start chelation. Consider probiotics since he had lots of antibiotics. > S S > > > Hi, > > > > I am Ann, mother of 11 year old boy with autism-hyperlexia. > > I did some tests lately, following the advice of my DAN and as results > > of the hair analysis, I got that lead, antimonia and aluminium were out > > of range also he had very high levels of serotonin (not taking SSRI's) > > and that could be the cause of his heavy metals. > > The results of the hairtest didn't show mercury but I suppose he can > > not excrete, as a toddler he had too much vaccinations in 18 months of > > time with a lot of antibiotics to treat his ear infection. > > He is doing relatively well in regular school but attention is a very > > big issue for him, his neurotransmitter metabolism markers show more > > than 62,50 for 5-hydroxyindoleacetate, other markers are between range. > > He is getting a lot of supplements (carnitine, glutathion, ALA, MB12- > > SHOTS, tyrosine, 5-thp, gaba) but it doesn't seem to do a lot about his > > attention, I think chelating will be his only option. > > Any thoughts are very much appreciated. > > > > > > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 > > > > > > > Hi, > > Hi Ann, > > Welcome to the list. Was it a DDI hair elements test? Please > educate yourself on safe chelation because some DAN! docs use an > unsafe protocol. Does your son have ANY mercury amalgam dental > filllings? Is so, those will need to be safely removed according to > proper protocol before he can start chelation. Consider probiotics > since he had lots of antibiotics. > > S S > > > > > Hi, > > > > > > I am Ann, mother of 11 year old boy with autism-hyperlexia. > > > I did some tests lately, following the advice of my DAN and as > results > > > of the hair analysis, I got that lead, antimonia and aluminium > were out > > > of range also he had very high levels of serotonin (not taking > SSRI's) > > > and that could be the cause of his heavy metals. > > > The results of the hairtest didn't show mercury but I suppose he > can > > > not excrete, as a toddler he had too much vaccinations in 18 > months of > > > time with a lot of antibiotics to treat his ear infection. > > > He is doing relatively well in regular school but attention is a > very > > > big issue for him, his neurotransmitter metabolism markers show > more > > > than 62,50 for 5-hydroxyindoleacetate, other markers are between > range. > > > He is getting a lot of supplements (carnitine, glutathion, ALA, > MB12- > > > SHOTS, tyrosine, 5-thp, gaba) but it doesn't seem to do a lot > about his > > > attention, I think chelating will be his only option. > > > Any thoughts are very much appreciated. > > > > > ALA is best not given as a supplement I bet that he is probably getting between 50-100mg per day (as I was wrongly advised to give my son) this is chelation, it is much wiser to follow the cutler protocol regarding chelation which is much safer and is available on the files here in this group > > > > > > _______________________________________________ > > Join Excite! - http://www.excite.com > > The most personalized portal on the Web! > > > Quote Link to comment Share on other sites More sharing options...
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