Re: rough week with type 3

October 16, 2008

I get more of a burning sensation mostly in my calves but sometimes it

moves up. Maybe it is the same thing?? (It is really hard to

describe. My legs just feel like crap.) I have lost countless nights

of sleep due to this. I just thought it was " normal " . I usually use

heat, massage, or range of motion exercises to help.

Two cars and an EMG I think the storm should clear.

Suzanne

>

> Type 3 question, Has anyone experienced having their legs go numb and

> not gotten the feeling back? I'm having severe tingling/ neurapathy

> from the waist down. Sucks! Can't drive or work right now. Not sleeping

> well either due to the constant tingling and worry.

> I'm preparing myself for another EMG followed by the DX of typical SMA

> symptoms/ nothing we can do.

> To make matters worse, yesterday my son crashed one of our family cars

> into our second car. Arrrrrrg! At least he's OK.

> Hoping the shit storm clears pretty soon.

>

October 16, 2008

Sorry to hear you are going through these things. I have Type II and use a

wheelchair so, our situations are somewhat different, but I do experience

intermittent neuropathic pain in my right leg (it's more of a electrical shock

feeling). I understand that Neurontin can be effective in these cases but I

have not tried it. We try changing positions which sometimes helps. As a last

resort, Vicodin helps but I hate taking it (makes me feel nauseous). I suggest

that you ask your neurologist what options are available to you.

Umm, why another EMG? I would opt out of that as it probably won't change

things for you.

Lori

rough week with type 3

Type 3 question, Has anyone experienced having their legs go numb and

not gotten the feeling back? I'm having severe tingling/ neurapathy

from the waist down. Sucks! Can't drive or work right now. Not sleeping

well either due to the constant tingling and worry.

I'm preparing myself for another EMG followed by the DX of typical SMA

symptoms/ nothing we can do.

To make matters worse, yesterday my son crashed one of our family cars

into our second car. Arrrrrrg! At least he's OK.

Hoping the shit storm clears pretty soon.

October 17, 2008

Hi

Stupid question but is that " electrical shock feeling " called neuropathic pain?

I have SMA type II and use a powered wheelchair. I am 39. I had that kind of

pain in my right leg one evening - so bad I couldn't sleep during the night and

had to take half a day off from work. It was just like an electrical shock going

from my hips down to my heel. It was pulsating on my right leg - I have bad

scoliosis and I lean to the right. It happened when I had stressful period at

work and when my Roho cushion was too flat. Now I try to remember to add air to

the Roho every week and it has helped to prevent the serious episodes. My leg is

a little numb almost always but it doesn't matter as long as the pain is not

there.

It wasn't fun.

My way of combatting it was thinking " Well, I just need some rest and it'll go

away - this won't kill me like too much mucus in my lungs would..... "

smiles

-Taya

rough week with type 3

Type 3 question, Has anyone experienced having their legs go numb and

not gotten the feeling back? I'm having severe tingling/ neurapathy

from the waist down. Sucks! Can't drive or work right now. Not sleeping

well either due to the constant tingling and worry.

I'm preparing myself for another EMG followed by the DX of typical SMA

symptoms/ nothing we can do.

To make matters worse, yesterday my son crashed one of our family cars

into our second car. Arrrrrrg! At least he's OK.

Hoping the shit storm clears pretty soon.

October 17, 2008

Yes, that is one manifestation of neuropathic pain (not a stupid question). My

neuropathic pain is the result of pressure neuropathy from an old, poorly

customized wheelchair I once had.

Lori

________________________________

From: Taija Heinonen KOTI <taija.heinonen@...>

Sent: Friday, October 17, 2008 2:56:18 PM

Subject: Re: rough week with type 3