Status
Not open for further replies.

kanorman

New member
Joined
May 5, 2008
Messages
7
Reason
PALS
Diagnosis
03/2008
Country
US
State
Illinois
City
Rockford
Hi, my name is Kathy. I’ve been reading posts for the past three weeks; this is my first foray into asking a question. I am 43 years old and was diagnosed with probable ALS in March 2008. I have lost all use of my left arm and hand, and the right hand is losing strength quickly - my question is this - when does the stiffness start? Right now, my hand is atrophied and weak but it is more like jello - than like a stiff board. I experience pretty severe cramps and spasms but they eventually pass. Is this unusual? Did anyone else start out with more flaccid weakness that then became stiff? Thanks in advance for any insights into this process - finding this site has been a god send to me. You are an amazing group of human beings.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
hi kathy , my mum has als, her hands just started off being really weak, difficult to turn taps and grip things, gradually it started weakening a lot more, now its difficult to get dressed, close zips and other clothing, washing cooking etc. She does get cramps some more severe than others, she takes quinine tabets that the neuro prescribed they are great, if you cant get them you can get tonic water with quinine in any shop and she drinks this regular, being irish she usually has it in a vodka ha, and it helps her sleep better with few cramps! The doctor said that this was good for her, and it works! Keep up your spirits, hope all goes well for you
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Hi kathy,

Sorry that you have to be here, probable ALS is better than diffinate ALS.
The stiffness is from the upper motor nuerons..... Do you know if you have any UMN signs, hyperreflexes, clonus,
babinski. etc., That's why this disease is so hard to diagnosed, everybody presents in a different way. Were you diagnosed'ed by a ALS specialist? This is a great forum everyone is very helpful.
 

kanorman

New member
Joined
May 5, 2008
Messages
7
Reason
PALS
Diagnosis
03/2008
Country
US
State
Illinois
City
Rockford
Hi kathy,

Sorry that you have to be here, probable ALS is better than diffinate ALS.
The stiffness is from the upper motor nuerons..... Do you know if you have any UMN signs, hyperreflexes, clonus,
babinski. etc., That's why this disease is so hard to diagnosed, everybody presents in a different way. Were you diagnosed'ed by a ALS specialist? This is a great forum everyone is very helpful.

Crystal,
Thanks for your reply - I have hyperreflexes in my jaw - but not in any other area. I'm in the process of being referred to the ALS clinic in Milwaukee, WI. keeping my fingers crossed.....Kathy
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Kathy,

I will keep my fingers crossed for you also.
Take care and keep us posted..
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Kathy. Once all the muscle has atrophied and the tendons shrink , then you get stiff. If you have someone do range of motion exercises with you, you can slow or in some cases stop the stiffening.
AL.
 

stilljoyful

Member
Joined
May 26, 2008
Messages
11
Reason
PALS
Diagnosis
08/1999
Country
US
State
pa
City
blossburg
I've had ALS for 9 years and have yet to experience stiffness.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Uggh the stiffness, an upper motor neuron problem.. Gnc sells a product call leg cramps, it contains quinne. Baclofen helps, as does non scented asper creme Hope this helps.
 

w10072

New member
Joined
Apr 2, 2008
Messages
2
Reason
Loved one DX
Diagnosis
03/2008
Country
UK
State
Northern Ireland
City
Lisburn
Hi Kathy, my name is Sandra and I'm from Northern Ireland. My brother was also diagnosed with ALS on 22 March 2008. It seems to be his right arm that is weaker than the rest, although he isn't walking straight (bit like a robot). He is going for this controvertial stem cell treatment to China on 9 Sept 08 to get 5 injections. We don't know if this will help him or not, but he wants to give it a try. We're just keeping our fingers crossed that it does something to help. x:smile
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Sandra. Welcome but sorry you had to come looking for us. Sadly there has not been much luck with the stem cells yet. I hope you'll not be too upset with the outcome. Some people have had some sense of feeling better but it generally only lasts a few months at best. I wish there was better news but they have not perfected the process yet and I'm told it'll be a few more years, if they can get it to work at all.

AL.
 
Status
Not open for further replies.
Top