Re: B- 12

[Guest guest]

Hi ,

I'm sorry it took so long to get back to you about the B12. The time seems

to fly by... It's great your doctor is giving you 1cc of B12 a week.

Unfortunately a lot of doctors don't realize that even though a blood test

comes back normal for B12...it isn't enough for CMT patients. I wish I

could provide where I got that information but it was years ago and I don't

have it anymore. Maybe if you search the internet you'll find it?

To me

the proof was how my balance improved. Do you have any balance problems? I

also believe the next best way to take B12 is Sublingual Vitamin B12

1000mcg. It's important that it does not have any artificial flavoring in

it. As far as I know you can't overdose on it. I take it 3x a week when I

remember ;-)

I seem to take 3 steps forward towards improving my health and then maybe

one step backwards (because I loose focus) and then forward I go again! LOL

I have so many things I want to share with our group... Like things that

hurt my health and things I did to improve it. I love this group and I am

so thankful for you all and especially Gretchen for starting it!!!

Hopes this helps....

Have a great day!

Kay~ Seaside Oregon

[Guest guest]

Hello All!

I have been giving myself 1cc of vitamin B-12 (methocobalamin)

via injection into my hip for several years now. My neurologist recommended

it, and he & his nurse " tutored " me on how and where exactly to give myself the

injection. It is 99.99% painless, and I do bellieve it helps. I know it

has to be doing some good, although I may not actually feel it always, because

I know that B-12 is VERY IMPORTANT FOR GOOD & PROPER NERVE HEALTH & FUNCTION,

ESPECIALLY THE MYELIN SHEATH.

It is very safe, because it does not build up in any of your organs. Whatever

your body does not use is flushed out through your urine. He told me I only

need to take it once a month, however, I

find it more effective when I do it every other week. For a while I even took

it once a week.

The best way for b-12 to be absorbed and used by your body is for it to be

injected intramuscularly, and the deeper the better. I use the 1 or 1-1/2 inch

long 25 gauge (very thin) syringes, and alternate left & right hips. YOUR

DOCTOR CAN ADIVSE YOU ON WHAT AND WHERE IS BEST FOR YOU.

Sublingually is the nest best way to take it, however you must take a very large

amount for a good amount to truly be absorbed and used.

So, once you get over the initial fear of the needles, it is very safe and easy

to do. Mind over matter. Or, you can have a friend or family member do it for

you ( I do my Mom's injection).

It is also very inexpensive for the injectable B-12 and the one time use

syringes.

I believe in doing anything and everything that may be good for me and possibly

help slow the progression of my CMT, make me feel better, and help me stay as

strong and energetic as possible. NOT EASY, but I will not give up or give in

to it!!

Yes, I have accepted it (I am 44, diagnosed at 9), I have made adjustments, and

I try to keep moving on, as difficult as that may be at times.

Let's persevere!!

Blessings & Peace to You All,

Holly Waters

Corpus Christi, TX

[Guest guest]

Hi Holly,

I was doing and am still doing my B12 injections like you. I use the same size

needles too. Your post was much more detailed than mime. Thank you!

Kay~ Seaside Oregon

[Guest guest]

Hi Holly,

I'm very newly diagnosed (about 6-7 weeks), so please pardon my dumb

question: is taking B12 orally really not as effective as injecting

it? Do I understand correctly that I should avoid B6? I've been taking

a lot of B12 and it does seem to help, but the effect seems to be

primarily on my mood which has been, at times, very dark in the

aftermath of the diagnosis.