Peg,
Thank you for this information. I’m sure it will help many. I am so sorry to
hear all the problems you are dealing with. You will be in my prayers. I
cannot even imagine how you are handling all your issues. But God gives us
strength beyond belief. God bless and keep you.
Joyce in IL
> On Mar 9, 2016, at 11:12 AM, peg <[email protected]> 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 <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 [email protected]
> To unsubscribe from this group, send email to
> [email protected]
> For more options, visit this group at http://groups.google.com/group/CMLHope
> <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 [email protected]
> <mailto:[email protected]>.
> For more options, visit https://groups.google.com/d/optout
> <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 [email protected]
To unsubscribe from this group, send email to
[email protected]
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 [email protected].
For more options, visit https://groups.google.com/d/optout.
