Re:Feet/Hands and IV / IG Treatment

[Guest guest]

Hello all ! What a blessing this group has been for me, thank you all.I too

have lots of problems w/feet & hands. Just like Carolyn my big toe on the

left foot just sits there & flops around;like its not connected to my body.

Sometimes it takes me a few tries to get my left shoe on as my toe will curl

under and I can't get it to straighten out. My feet are also very wide. They

burn alot after standing for only short periods of time on them and they

hurt so bad.I too have callouses and swollen ankles which twist on me often.I

trip all the time over nothing & walk on the outside of my feet.Seems

like the left side of my body is the worst as that is where most of my

problems are epecially my knees.So its no wonder that my Right hip

ocassionally flares up and is quite painful ( I've been told that I now have

osteoarthritis in my hip).

My hands are getting bad as I have no strength in my thumbs at all.

Who knew how important thumbs are. Just like my toes my fingers are numb. I

get electric shocks in my legs and arms. The spasms in my legs are increasing

and sometimes quite painful. My neck hurts all the time and cracks when I

turn my head. Sometimes I will awake to pain radiating down my entire left

arm w/the electric shocks and numbness leaving me unable to use my arm at

all. Its like my arm is paralyzed. I feel like I am falling apart but I am

able to laugh at myself and try to find some humor in all of this.I have

learned to appreciate what I do have and what I can do and I am learning to

adapt.My 5yr old granddaughter keeps things light and brings me so much

laughter and joy.Its great seeing things through her eyes. I have a question

for the group: my neurologist told me he would like to try IV/IG therapy on

me to see if that would slow the progression of the disease. When I

questioned him about it he said not to worry that he wanted to talk it over

w/another neurologist first before he would go into detail about it. He told

me not to get my hopes up.Does any one know anything about IV/IG treatment?

Jeannine

[Guest guest]

So good to hear that others experience the " lop-sided " progression of

the disease. And the big toe thing! Yes, it's just weird - you know

it's connected, but it just doesn't seem real. Of course when I trip

and it turns under, I know it's real! 'cuz it hurts!! Don't know

anything about that IV/IG thing, but keep us informed, please.

Regards, Carolyn

> Hello all ! What a blessing this group has been for me, thank you

all.I too

> have lots of problems w/feet & hands. Just like Carolyn my big toe

on the

> left foot just sits there & flops around;like its not connected to

my body.

> Sometimes it takes me a few tries to get my left shoe on as my toe

will curl

> under and I can't get it to straighten out. My feet are also very

wide. They

> burn alot after standing for only short periods of time on them

and they

> hurt so bad.I too have callouses and swollen ankles which twist on

me often.I

> trip all the time over nothing & walk on the outside of my

feet.Seems

> like the left side of my body is the worst as that is where most of

my

> problems are epecially my knees.So its no wonder that my Right hip

> ocassionally flares up and is quite painful ( I've been told that I

now have

> osteoarthritis in my hip).

> My hands are getting bad as I have no strength in my

thumbs at all.

> Who knew how important thumbs are. Just like my toes my fingers are

numb. I

> get electric shocks in my legs and arms. The spasms in my legs are

increasing

> and sometimes quite painful. My neck hurts all the time and cracks

when I

> turn my head. Sometimes I will awake to pain radiating down my

entire left

> arm w/the electric shocks and numbness leaving me unable to use my

arm at

> all. Its like my arm is paralyzed. I feel like I am falling apart

but I am

> able to laugh at myself and try to find some humor in all of this.I

have

> learned to appreciate what I do have and what I can do and I am

learning to

> adapt.My 5yr old granddaughter keeps things light and brings me so

much

> laughter and joy.Its great seeing things through her eyes. I have a

question

> for the group: my neurologist told me he would like to try IV/IG

therapy on

> me to see if that would slow the progression of the disease. When I

> questioned him about it he said not to worry that he wanted to talk

it over

> w/another neurologist first before he would go into detail about

it. He told

> me not to get my hopes up.Does any one know anything about IV/IG

treatment?

> Jeannine

[Guest guest]

Hi Jeannine, I have all the same problems but my big toe is ok. I

have to put on my

afo's first then put my shoes on. I have read information on the net

in regards to the IV/IG Treatment for CMT. I wish I could tell you

where I found the info but I can't remember. My memory is really

shorting out on me. These treatments work for only very small

percent, they are expensive and have to be repeated over and over.

For most people with CMT it did not change anything. I hope others

respond. I just hope I am remembering what I read correctly,

Continue your search of the net and you will find those answers.

Perhaps some of us have tried the treatment. H

-- In CMTUS (AT) e, mocha1060@a... wrote:

> Hello all ! What a blessing this group has been for me, thank you

all.I too

> have lots of problems w/feet & hands. Just like Carolyn my big toe

on the

> left foot just sits there & flops around;like its not connected to

my body.

> Sometimes it takes me a few tries to get my left shoe on as my toe

will curl

> under and I can't get it to straighten out. My feet are also very

wide. They

> burn alot after standing for only short periods of time on them

and they

> hurt so bad.I too have callouses and swollen ankles which twist on

me often.I

> trip all the time over nothing & walk on the outside of my

feet.Seems

> like the left side of my body is the worst as that is where most of

my

> problems are epecially my knees.So its no wonder that my Right hip

> ocassionally flares up and is quite painful ( I've been told that I

now have

> osteoarthritis in my hip).

> My hands are getting bad as I have no strength in my

thumbs at all.

> Who knew how important thumbs are. Just like my toes my fingers are

numb. I

> get electric shocks in my legs and arms. The spasms in my legs are

increasing

> and sometimes quite painful. My neck hurts all the time and cracks

when I

> turn my head. Sometimes I will awake to pain radiating down my

entire left

> arm w/the electric shocks and numbness leaving me unable to use my

arm at

> all. Its like my arm is paralyzed. I feel like I am falling apart

but I am

> able to laugh at myself and try to find some humor in all of this.I

have

> learned to appreciate what I do have and what I can do and I am

learning to

> adapt.My 5yr old granddaughter keeps things light and brings me so

much

> laughter and joy.Its great seeing things through her eyes. I have a

question

> for the group: my neurologist told me he would like to try IV/IG

therapy on

> me to see if that would slow the progression of the disease. When I

> questioned him about it he said not to worry that he wanted to talk

it over

> w/another neurologist first before he would go into detail about

it. He told

> me not to get my hopes up.Does any one know anything about IV/IG

treatment?

> Jeannine