Hi Everyone, sorry I disappeared for a minute again. On top of 6 years with CML and five other cancers, 26 years with Multiple Sclerosis, and plain old age catching up with me, I am also sole care giver for my husband who has acquired brain damage and is insulin dependent. He has been difficult these past few weeks, sort of like an angry out of control five year old! I am scrambling right now to maintain a small business contract that is the difference between us keeping or losing our home, so my plate has been really full.
However, when I caught a rare "me" moment to catch up on the chats, I happened to see one about burning leg pain, that was described exactly like mine. Every night it was like someone poured gasoline on my feet and lit them on fire! It is neuropathy. Hard to say if it is from my MS, Gleevec I took for 8 months, Sprycel for 3 years or Tasigna that I am on now for the past two, or even from the permanent malapsorbtion syndrome, a gift left from a really bad reaction to Gleevec. However, in my search for relief, here is what I learned about B vitamins. B6 is somewhat neurotoxic and can cause nerve pain, and make existing nerve pain worse. This is pyridoxine the supplement, not vit B6 derived from natural food sources. But sadly, someone decided B6 was a good thing and the B6 supplement pyridoxine is jammed into everything now! It was in my multi-vitimin, my immune booster, an amino acid supplement I take, and even in the nutritional yeast I cook with! Start reading those labels! Too high a level of B6 is bad, and any amount of pyridoxine will make neuropathy and nerve pain worse. B12 is the other side of that! Not enough B12 can cause nerve pain and neuropathy. And studies have shown that a blood test for B12 may show as normal when there is still actually a deficiency. Additionally some people believe that the only way to supplement B12 is with an injection, however, clinical studies have shown that oral B12 is just as effective. Most of my neuropathy, and other nerve pain from a spinal fracture, was dramatically reduced by eliminating pyridoxine from my diet...it took a couple of weeks, but the results have been lasting for a couple of months now, and if I accidentally get into pyridoxine, I notice the difference by the very next day! This week I started B12 and it's showing an additional improvement also. Just wanted to share this in case it will be of benefit to anyone else...I think there is a tendency for doctors to miss the forest for the trees, and think that everything is related to CML, the treatment, or in my case also the other cancers or my MS, and assume the situation is not correctable or requires more drugs. I live in Los Angeles where there is an abundance of specialist. I was blessed to have been directed first to a neuromuscular specialist who shared the B6 "secret" with me and then a gastric nutritional specialist who shared about other vitamins, like B12. Hope sharing this helps someone else. Fight on! peg -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
