Trembling

[nebrhahe53]

Do any of you have problems with shaking? My arms and legs now tremble constantly-almost like I have parkinsons or something? I had not seen that as a symptom.

 

[bigmark1954]

Yep....I have it in both hands and my upper left arm. I don't know if it would be called trembling or tremors, guess it doesn't much matter. It does kinda remind me of a mild Parkinson's twich, and is uncontrollable. It happens randomly, and fatigue and stress seem to fuel it.

Hope you are OK Neil....

 

[affected]

Yes Neil it's called clonus.

Chris had it in his jaw as one of his very earliest symptoms. Later he had it in his legs.

 

[Music67]

Nebrhahe53 - Can I suggest rubbing the affected areas with cocoanut oil? It often reduces the twitches in me. It can't hurt to try it.

 

[nebrhahe53]

Almost every area in my body is affected now-hands fingers arms legs neck. So it doesnt ever go away-just gets worse? Quality of life is starting to be a real issue.

 

[affected]

Doesn't sound so much like clonus if it is happening all the time Neil. Have you asked your doctors about it?

With Chris, usually repositioning the leg would stop or minimise it.

I'm so sorry this monster is so cruel, just so cruel

 

[Nikki J]

I have tremor not clonus very different. I had tremor first. They tell me it is unrelated I no longer believe it. Too many PALS have it

 

[nebrhahe53]

Its terrible-I feel like a puppet on a string. I just pray it tamps down, I can barely stand now-not because of weakness but because of this.
Have been under a lot of stress and Im sure thats making things worse. Lately I have episodes where I feel as if its hard to swallow. Not like before where I was choking but its like I have a lump in my throat or maybe dry mouth.
If you saw me I'd look like a 90 year old the way I jerk around.
Funny, used to be a real good dancer, just watched a tape of my wedding 20 yrs ago. I did the jerk then cause i wanted to!

 

[nebrhahe53]

Thanks Tillie-it helps to have people like you who can remember us after we are gone.
Feel bad for my wife-she is having to take more and more responsibility. I also wonder if I am starting to get FTD. Lately I am getting so angry about things I know I have no control over.

 

[Mike in Maine]

Nikki,
While at the VA ALS clinic down in Boston that was something they looked for. They found it in both of my hands, I think it is something to be expected. Do you take Baclofen, They found my tremors while off the baclofen waiting to begin the trail for the pump.

Mike

 

[Mike in Maine]

Neil,
Sorry addressed my reply to Nikki, should have been you. oops

Mike

 

[bigmark1954]

Nikki,
While at the VA ALS clinic down in Boston that was something they looked for. They found it in both of my hands, I think it is something to be expected. Do you take Baclofen, They found my tremors while off the baclofen waiting to begin the trail for the pump.

Mike

Mike is right......I recently started on baclofen and it helps a little with my shakes tremors and clonus. The only down side is that it is a b!tch to get used to, after a month I am still only on a half tab 3 times daily.

 

[nebrhahe53]

I take baclofen 2x per day

 

[Barbie]

my hubby has clonus or tembling too. worse when he is stressed. only in his legs now they shake non stop. he did have severe clonus in his jaw also--pulled his jaws out of bite alignment. Neil in the beginning, it was body wide for him too.

 

[Clearwater AL]

My wife had tremors of her head and hands bad (she has Alzheimers) when she got stressed or nervous. But... Zanax (for her) seems to minimize them considerably. Zanax is not as side effective as Valium. Her knowing her head was shaking bad increased her agitation (in the presence of others), which increased the stress and on and on. But... the Zanax seems to do the trick. Talk to your doctor.