Do spasms/tremors ever stop?

[rachelg]

My husband hasn't been able to walk for a year. he can't move his legs at all but my goodness how his legs suddenly shoot forward, go rigid and shake violently.

He says is doesn't hurt but the shakes are so violent it causes his bottom to gradually nudge forward resulting in a rehoist so that he isn't slumped in his chair.

He asks - does the shaking ever stop? He can't move his arms but they don't shake.

 

[trfogey]

Once the lower motor neurons that control those muscles are gone, the spasms and tremors should stop. Right now, the upper motor neurons that control those muscles are gone (making them uncontrollable and unusable), but the lower motor neurons are still intact. Therefore, the reflex arc in those muscles is still intact and can cause the muscles to contract -- the typical brisk reflexes of UMN pathology.

 

[rachelg]

Thankyou trfogey for your response. I told Mark this and his eyes smiled and he (with eyegaze) said "someone told you that didnt they" - he knew instantly this wasn't something plucked from my brains knowledge base! He also said that even though its movement - he wishes his "lowers" would give him a break.

 

[kmendsley]

They will give him a break soon enough...till then...maybe a leg strap for his wheelchair so his legs don't jut out as far? Just a thought

 

[LizT]

Not to burst your bubble here, but they may not stop anytime soon. Hopfully they will relax and give him a break, but sometimes they are there for awhile. my pals is going on 10 years with this disease. he is completely immobile and can only move his eyes and makes some faces. Hes been this advanced for 5+ years. He still has spasms and all that.

 

[ladyrider]

Not to burst your bubble here, but they may not stop anytime soon. Hopfully they will relax and give him a break, but sometimes they are there for awhile. my pals is going on 10 years with this disease. he is completely immobile and can only move his eyes and makes some faces. Hes been this advanced for 5+ years. He still has spasms and all that.

oh my! Your pals has been in advance for 5+ years? 10 years with this disease? I cannot imagine me being like that for that long. God blessed him or her!:shock:

 

[LizT]

He's a trooper all right!

 

[lovedbygoldens]

They put my mom on Gabopenten (sp?) for nerve pain, tremors, and the tingling/neuropathy symptoms. Has anyone else had any luck with it? Maybe worth asking his neuro about.

 

[rachelg]

Mark has been on Gapapentin for ages - no nasty side effects. He also takes Tizinadine for spasms - makes him very sleepy but does help a bit.

 

[Okie2]

I have had gabapenton and then switched to baclofen, only reason for switch was different DR. ALS clinic DR likes baclofen better. No real side affects from either. Baclofen seems to help with spasms and cramps.

 

[AlabamaGal]

My hubby uses the Neurontin/Gabapentin for itchiness. It works.

 

[hangingon1]

After two years, I noticed that my wife does not complain about spasms anymore. I do not know if this is and indication that the muscles are completely gone or not. I do know that she was on Flexeril and that helped a lot, although it made her drowsy.

 

[dianan]

Am I getting this right? The leg spasms stop when the neurons are gone, which is a bad thing anyway. So really it's a bad thing when the spasms stop, right? My dad calls my mom a "spring-loaded woman" because her legs are so stiff. When he moves them, like to get in the car, they spring back. He says it's harder to move her legs than it is to lift her up.

 

[trfogey]

Am I getting this right? The leg spasms stop when the neurons are gone, which is a bad thing anyway. So really it's a bad thing when the spasms stop, right?

Like most questions about ALS progression, the answer is "It depends."

If the spastic muscles no longer serve a purpose and are just a source of unrelievable pain for the PALS, then the end of the spasms via motor neuron death can be a good thing. If, on the other hand, the spastic muscles still serve some useful purpose and the pain involved can be relieved or made tolerable for the PALS, then losing the spasms through motor neuron death would be a less desirable outcome.

Too often with ALS, progression forces us into choosing between two evils in what we wish for.

 

[notme]

They put my mom on Gabopenten (sp?) for nerve pain, tremors, and the tingling/neuropathy symptoms. Has anyone else had any luck with it? Maybe worth asking his neuro about.

Please be careful with this drug. It can have horrible side effects including swelling and brain fog. Neurontin was what I was taking and it caused my legs to swell so badly, I ended up in a nursing home unable to walk at all--and had a horrible ulcer on my foot due to lack of bloodflow from the swelling.

For me, it didn't help with nerve pain at all. I had much better luck with topapax personally.