Twitching in thighs at night

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Tomswife

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Lost a loved one
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08/2022
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Livingston
Tom is PALS with bulbar onset. He just started having twitching in his thighs and also his foot flexing on its own. We understand these symptoms are part of ALS. He does sit a lot. He is on Riluzole, Tudca, Nudexta and other rx for hbp&cholesterol.
I have been encouraging him to stand more to get weight on his legs. He can stand for short periods. (I see lots of references to this symptom but they are on the "could this be" thread). Is there any treatment for this. Difficult to sleep. Thanks.
 
I find that magnisium alleviates these somewhat. I take it primarily to minimize cramping. Some people use topical magnesium. I have used a spray in the past and there is a cream

if the foot thing is clonus and he is spastic you might ask the neurologist about baclofen or similar. I also find cold makes my spasticity/clonus worse. I am lower motor dominant and in the summer it was barely noticeable
 
I will also reach out to clinic next week. These are good thoughts. We try not to let him get chilled. He gets cold easily. Thanks Nikki.
 
For the twitching in bed, since you say he gets cold, I would try warming from underneath with a low voltage heated mattress pad. These can be used with hospital beds. They also make a heated throw that can be used in a wheelchair when near an outlet.
 
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I have no idea but when has that stopped me from brainstorming?
- Has calcium level been checked? I wonder if it's low?
- My PT has given me three exercises to do with my feet and calves from a seated position -- I can do them while watching TV.
- There are different kinds of massage, and some types don't take a lot of strength, e.g. take socks off, start at the knee with both hands (he would be lying down) and stroke towards feet, and follow through the foot. I'm crazy about this kind of massage. I have no idea if it would help, though!
 
Like the massage idea. Thanks. Will try.
 
In ALS, you generally want to massage up toward the center because with immobility, edema is more likely. Also, make sure you avoid any "boggy" areas.
 
Igelb, that's good to know.

What I was actually thinking of was more of a gentle stroking -- that's what I like on my legs.
 
Understood, NY. Sometimes we add detail for future readers as well as the OP.
 
I received a response from the ALS clinic. It is below.

"Twitching is a benign issue and does not correlate with damage to muscle or disease progression. It’s just bothersome to some people.

Medical marijuana and CBD have reportedly been helpful for ALS patients. Also lifestyle modifications- including improved sleep, reducing caffeine, not physically over exerting one self, reducing stress and anxiety can help.

Gabapentin and pregabalon can be helpful… would avoid the others as they carry larger side effect profiles. "

However, I did not receive a decision or Rx or recommendation. Just this response. So I followed up and asked for a decision.

Waiting.
 
If Tom is taking a statin, that can make cramping, twitching, and muscle pain worse.

The only way I can make my twitches go away is cold water. Go figure. They are worse at bedtime, especially in my feet and legs and, I think, mine get worse because I'm still walking.

A few things that help me are CBD (Charlotte's Web), 1,200 mg. of magnesium (in divided doses), Gabapentin, and massages to my calf muscles. I also take Valium because both Mayo and U of Florida ALS doctors said they use it to treat cramp/fasciculation syndrome and it was worth a try for ALS-related cramps and twitches. Some people shy away from benzos but IMO whatever makes me more comfortable, I'm taking.
 
Thanks Kim.
The clinic responded - gabapenten 100 mg at bedtime. May increase dose if needed.

I have been giving Tom valium but it does not seem to help.
 
Gaba 100 mg. is a very low dose. It does make me groggy in the morning but I sleep better with it. Depression can be a side effect and I cycle off an on it. My friend with nerve pain takes 1,600 mg. a day. Yikes!

I really hope it helps Tom. We just have to keep trying things until something works.

I had what my podiatrist thought was plantar fasciitis in 2020. I had been walking daily and swimming in the pool but I was walking on hard tile in bare feet in the condo. After two shots of steroids in my foot, another podiatrist said it was nerve pain from ALS. I was doubtful but that's what it turned out to be. They did an MRI with contrast and another nerve conduction study/EMG that proved it. Nothing helped until I found ice socks on Amazon. The cold takes the pain away. Mayo advised me that cold could damage the nerves in my feet. LOL

The pain is so bad if I don't use the ice socks, I'd rather have my foot cut off than endure it. It is on the foot where this all started.
 
Kim. So sorry you went through all that. Foot health is so critical.
I don't know what the twitching feels like for Tom:
- it comes and goes
- it is daily
- is so extreme he jumps
- sometimes his entire leg taps rapidly and out of control
- it keeps him awake at night.
 
Leg tapping sounds like clonus? it is upper motor and related to hyperreflexia and spasticity. Look for videos online and see. The treatment would be diferent
 
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