Re: B-12 injections - Do any of you have this.....

[Guest guest]

Marika,

I am now 85 years old and had no energy until my doctor suggested vitamin B-12.

I was taking the tablets and she said that my body was not using them. Now I go

to the doctors office and get a B-12 injection once a month. I have a lot more

energy now. This can be done by prescription that can be sent to your home....I

think they go under the tongue. I hope this works for you.

Jeanann.

Hello

Its late evening her in Denmark, it won't be that long before I'm going to

bed. My body needs it.

The last 3 days I have been so tired. It comes in periods. I am so tired

that I can't even sleep. It doesn't feels very good. I know it is the

tiredness from CMT.

Most of the day I have had this feeling of my body, that I don't know

where it is.....even I can see it, but I don't feel it very well. If feel that

my left side has the same weigth as a feather......I've learned not to

panic when this happens. It has taken me several years to learn that.

In my head it spins.

When I have gone to bed, my body starts to vibrate, inside of body. Often

my body falls a sleep before my head. It is a strange feeling. I often wake

up in the middle of the night, because my hands hurt very oftens. Often

the pain goes from my fingers to my alboe. I just have to lie down in my bed

for max. 10 minutes before one of my hands are sleeping. It hurts when it

wakes up again.

In the morning, my brain gets up before my body. Normally I have to begin

making exercises in the bed, so my body body wakes up.

Besides all of this I have problem with my stomach. It doesn't work very

well.......(this I will describe another time....:-)....

It would be nice to hear if any of you have the same sympt.....I have read

a thread about " balance in the dark " ....this were very nice to know that

I'm not alone....

Thank you very much for the best forum....

/Marika

[Guest guest]

Research has shown that taking 2,000 mcg of B12 works as well as injections, for

those who don't absorb well. And any excess just passes on through.

Hansen

[Guest guest]

Hello

Found this on the medical alert for CMT....what does it mean???

Nitrous oxide (inhalation abuse or Vitamin B12 deficiency)

/Marika, 40, CMT1b

>

> Research has shown that taking 2,000 mcg of B12 works as well as injections,

for those who don't absorb well. And any excess just passes on through.

>

> Hansen

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[Guest guest]

Dear Jeanann –

I have been taking the injections once or twice a month for quite a while and I

don't know what I would do without them.  My husband gives me the injections

and

has gotten really good at it.  You can practice on an orange, I hear.  But

they

make me feel so much better.

My doctor tells us that the pill form isn't very effective because of stomach

acids.  Much of the B-12 is destroyed.  I'm glad they make you feel better

too! 

I definitely believe that make me healthier.

I really enjoy this list though I don't speak up very often… It's very

comforting.  I am in late stage for several years now and I feel so tired,

especially without the B-12.  I think it's worth it.  Hoping everyone has a

great day…

Best wishes,

Shaye (CMT types unknown, except they said it was more than one, began at age 4)

[Guest guest]

Hi Marika,

Nitrous Oxide is an anesthetic used in surgery. There are others than can be

used on persons with CMT. Abuse of N.O. would be using more of it than necessary

or using it for something other than a medical procedure.

As for the B-12, yes, I had some injections in my late teens/early 20's for

awhile. I never noticed any difference one way or another. It is very important

that your doctor has diagnosed you as vitamin deficient and then will treat you

respectively.

Yes, we who live with CMT are the 'experts'. This is true. Many of us have spend

countless hours educating doctors. Although there are many doctors who DO know

about CMT, they are either specialists, or research clinicans. Dr. Shy and his

teami s very good, I have met him, talked with him, but about research, not my

CMT. Other doctors like Greg , Tom Bird or Phil Change at U of Washington,

are good, there are many more especially at the Centers for Excellence.

Gretchen

[Guest guest]

Vitamin B12 deficiency can lead to lack of coordination and poor quality red

blood cells - which carry oxygen to the body.

Nitric oxide dilates the arteries and is good as far as I know but I didnt' know

it was inhaled.

IF you find out more - I'd like to know it.

I've taken 2000 mcg of b12 and 300 mg of b6 (since I'm diabetic) and never had a

problem with it.

Hansen

Re: B-12 injections - Do any of you have this.....

Hello

Found this on the medical alert for CMT....what does it mean???

Nitrous oxide (inhalation abuse or Vitamin B12 deficiency)

/Marika, 40, CMT1b

>

> Research has shown that taking 2,000 mcg of B12 works as well as injections,

for those who don't absorb well. And any excess just passes on through.

>

> Hansen

>

>

>

>

>

>

>

>

>

[Guest guest]

Jeanann,

Thank you for writing back:-).

Maybe I should talk to my doctors about B12-injections.

How many year have CMT lived inside of you....?

/Marika

>

> Marika,

>

> I am now 85 years old and had no energy until my doctor suggested vitamin

B-12. I was taking the tablets and she said that my body was not using them.

Now I go to the doctors office and get a B-12 injection once a month. I have a

lot more energy now. This can be done by prescription that can be sent to your

home....I think they go under the tongue. I hope this works for you.

>

> Jeanann.

>

>

>

>

>

> Hello

>

> Its late evening her in Denmark, it won't be that long before I'm going to

> bed. My body needs it.

>

> The last 3 days I have been so tired. It comes in periods. I am so tired

> that I can't even sleep. It doesn't feels very good. I know it is the

> tiredness from CMT.

>

> Most of the day I have had this feeling of my body, that I don't know

> where it is.....even I can see it, but I don't feel it very well. If feel

that

> my left side has the same weigth as a feather......I've learned not to

> panic when this happens. It has taken me several years to learn that.

>

> In my head it spins.

>

> When I have gone to bed, my body starts to vibrate, inside of body. Often

> my body falls a sleep before my head. It is a strange feeling. I often wake

> up in the middle of the night, because my hands hurt very oftens. Often

> the pain goes from my fingers to my alboe. I just have to lie down in my bed

> for max. 10 minutes before one of my hands are sleeping. It hurts when it

> wakes up again.

>

> In the morning, my brain gets up before my body. Normally I have to begin

> making exercises in the bed, so my body body wakes up.

>

> Besides all of this I have problem with my stomach. It doesn't work very

> well.......(this I will describe another time....:-)....

>

> It would be nice to hear if any of you have the same sympt.....I have read

> a thread about " balance in the dark " ....this were very nice to know that

> I'm not alone....

>

> Thank you very much for the best forum....

>

> /Marika

>

>

>

>

>

>

>