New with lots of questions about ALS

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DesertWoman

Member
Joined
Apr 6, 2006
Messages
13
Reason
PALS
Country
US
State
AZ
City
Tucson
Hi dear friends,

My name is Karen and I have upper motor neuron damage and as of my last EMG it appears I now have lower motor neuron damage.

I had lumbar fusion in 200 (l5-S1) and my docs are saying that my surgery has nothing to do with my MND.

I'm 46 years young and have two sons. I'm a divorcee.

I'm afraid to learn that I may have ALS. It sounds so strange just to even say or type that.

I have a lot to learn about ALS and my situation.

Thanks,

Karen
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'll get my wine in a few minutes. Just wanted to say welcome Karen and am wondering what desert you are in? This is a friendly place and you don't have to feel alone in the desert as they say. Ask away anytime. We're here to help.
 

DesertWoman

Member
Joined
Apr 6, 2006
Messages
13
Reason
PALS
Country
US
State
AZ
City
Tucson
Thanks for the welcome!

One of my greatest fears is that I am alone. I do have two sons, but they are starting their new adult lives.

I am not married, and even though I have a "boyfriend" he ain't going to take care of me.

I'm in Tucson, Arizona.

I am very afraid.

Karen
 

DesertWoman

Member
Joined
Apr 6, 2006
Messages
13
Reason
PALS
Country
US
State
AZ
City
Tucson
Thought I'd add my symptons:

1. my balance is very bad
2. hyperreactive reflexes


That's it!

I don't have the babinski reflex, but my latest EMG showed lower motor neuron damage, which was a new sign.

I had two weeks of feeling NORMAL - I could even run - and that was with 40 mg of Baclofen and 2 pills of Omega 3 fish oil.

My neurologist asked me to stop the Baclofen to see if it was the Omega 3 that was helping me, and of course I went back to the full spasticity in a few days and never was able to get back to that point again.

My new neurologist at the Mayo Clinic has suggested Zanaflex. I'm waiting for my insurance to approve.

Karen
 

ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
Karen,

As we usually say to a new member, sorry for the reason you're here but glad you found us. This is a friendly group which will give you a lot of support.

I'm 50 and live alone, so I know the fear you're experiencing. (Strangely I had a lumbar fusion also, c4-c6 in 2004). No easy way around it, just live each day the best you can as trite as that sounds.
 
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