Hi Peg and so glad to hear from you. So sorry about all your problems. I will keep and eye out for B6. I have a bad side pain under my right rib and tests don't show anything. They are also adding potassium to everything and I have to watch because my potassium has a tendency to go high. I pray everything gets better for you. Fight in sweet warrior!!!
My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Mar 9, 2016, at 12:12 PM, peg <peg....@live.com> wrote: > > 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. -- -- [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.
