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LittleHeart

Member
Joined
Jul 29, 2006
Messages
14
Reason
PALS
Country
US
State
Alabama
City
Grove Hill
Hello everyone,
I found this forum a couple of days ago and i know i saw a thread for newbies but cant find it now.
I married my husband in Dec. of 05 against my freinds and familys advice.He was diagonosed with ALS in March of 03.
There were 3 other men that were freinds of his who were diagnosed at same time 2 of them have passed and one has been completely bed ridden for 2 years now.
His seems to be a slow progression.He has lost alot of weight and has mucsle atrophy in both arms.But is still able to walk most of the time and do just about anything he wants to do.
However in the last 3 months he seems to be going downhill.
We are in process of seeing a diffrent neurologist,because the one he has always seen for this just doesnt want to listen.When we go in to see him or even his regular docter with some new problem they just say you have ALS u have to learn to live with it.
I guess my main question is this,I realise there is no cure for this horrible disease but cant they treat the symptoms like the weakness and the muslce cramps?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi LittleHeart. Glad you found us but sorry you had to be looking. Unfortunately there is not much that can be done for the weakness and don't believe the people that want to sell you vitamins and expensive supplements. We try to screen them out of here. There are some drugs such as Quinine, Baclofen and Levadopa and others that may help with the cramps. If your doctor has given up on you it is time to find a new one. Just because there is no cure doesn't mean there is no hope. Find someone with a better attitude. They are out there.
 

LittleHeart

Member
Joined
Jul 29, 2006
Messages
14
Reason
PALS
Country
US
State
Alabama
City
Grove Hill
Thanks GrampAl. Thats what i keep telling him that there are other docters out there.
He isnt one to question the docters and i am.Like i said earlier im new in this.
He was hesitant about seeing another docter but i insisted so he made appointment today.
Is it normal that he isnt on any medications at all? Well exept blood pressure med that is. Im not complaining about it just wondering if its normal,after reading some of the threads here and seeing all that others are taking.
Also can someone advise me on what type of questions i need to ask this new docter?
Im trying to make a list and dont want to leave anything out that might help him.
Any advice is welcome.
Thanks,
LittleHeart
 

southern lady

Member
Joined
Apr 24, 2006
Messages
28
Reason
PALS
Country
US
State
AL
City
Jackson
Only one approved drug

Dear littleheart. I think your name should be big heart! Most nuerologists do not come across as warm & caring. Mine immediately started talking to me about wheel chairs & feeding tubes. (I'm still eating & walking, but not very well.) They also advise you that there is a very expensive drug called Rilutek that might increase your life span by 2 or 3 months. I didn't take it at first, but went on it in Nov. Hard to say whether it helps. Good luck with visit to new doctor. (I get some relief from otc anti-inflammatory called naproxen sodium, but wait & see what new dr. says.) There are some very knowledgeable and compassionate PALS & caregivers on this sight who will help you & encourage you.
 

LittleHeart

Member
Joined
Jul 29, 2006
Messages
14
Reason
PALS
Country
US
State
Alabama
City
Grove Hill
I want to say thanks again for everyone being so nice.
Its hard on me to watch him deteoriate. But i just put on a smile and keep goin.
Because as hard as i think it is on me it has too be 10 times that for him.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
It's not easy but when we have someone like you beside us it makes it 10 times easier. You really do have a BIG heart. AL.
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
LittleHeart said:
Hello everyone,
I found this forum a couple of days ago and i know i saw a thread for newbies but cant find it now.
I married my husband in Dec. of 05 against my freinds and familys advice.He was diagonosed with ALS in March of 03.
There were 3 other men that were freinds of his who were diagnosed at same time 2 of them have passed and one has been completely bed ridden for 2 years now.
His seems to be a slow progression.He has lost alot of weight and has mucsle atrophy in both arms.But is still able to walk most of the time and do just about anything he wants to do.
However in the last 3 months he seems to be going downhill.
We are in process of seeing a diffrent neurologist,because the one he has always seen for this just doesnt want to listen.When we go in to see him or even his regular docter with some new problem they just say you have ALS u have to learn to live with it.
I guess my main question is this,I realise there is no cure for this horrible disease but cant they treat the symptoms like the weakness and the muslce cramps?

Hi Little Heart,

I do believe your husband is a very lucky man ALS or not. He has a jewel in you. I can only speak from my own experience but both of my neurologists have told me not to waste my time or money on those expensive drugs cause their good does not out weigh their cost. So i don't take anything except COQ 10 for the ALS. Some people swear by it and others just take it cause the doctor put them on it. They can't actually tell you if it has helped or not. Hope you have better luck with the new doctor.

Love and Prayers
Marlo
 
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