Anybody else have these symptoms?

[danni1983]

Sorry if this thread is in the wrong forum but just wanted to query something?

My mum was diagnosed with ALS in february this year. She can barely walk and cannot walk unaided she has to have a walker to get about. The past few weeks she has noticed that she cannot place her heel on the floor whilst she is walking,she has to walk on balls of her feet. Her leg tremors until she puts her foot flat on the ground,she has to force her heel down. Has anybody else found this?

Thanks xx

 

[affected]

Danni, this sounds like clonus that she is experiencing. It is an ALS symptom. With the way it is happening you need to be very wary of avoiding her falling and being injured as this will only speed progression further.

Such an awful disease

 

[danni1983]

Thanks Tillie,i had an idea it was that its just i was unsure as i read that people with Als found it hard to stand on their tiptoes,yet my mum still can. She does take extra extra care,in fact she very rarely walks now as she is very apprehensive of falling. x

 

[bigmark1954]

A very high percentage of ALS patients cannot walk on their heels or tiptoes. It may hyave something to do with clonus, but clonus in the ankles and feet normally is manifested with involuntary movement of the affected joint when moved in certain positions, or under a load..,

 

[affected]

Her leg tremors until she puts her foot flat on the ground,she has to force her heel down.

Thanks xx

Hey Mark, that's what I read was being described

 

[bigmark1954]

Hey Mark, that's what I read was being described

Tillie

I guess having it doesn't count for anything. They actually brought neurology students to one of my clinic visits for a demo of what clonus in the ankles was all about.
I guess you can't always be right Tillie
Apologies for inserting my opinion

 

[affected]

Marky why would you apologise to me?

Clonus can happen in any of the muscles, hers may not be ankle clonus, it sounds more like the leg clonus Chris had towards the end of his mobility.

All opinions are valid, and I often am corrected on points here and am always learning.

 

[bigmark1954]

Marky why would you apologise to me?

Clonus can happen in any of the muscles, hers may not be ankle clonus, it sounds more like the leg clonus Chris had towards the end of his mobility.

All opinions are valid, and I often am corrected on points here and am always learning.

Tillie

I think it is more related to hyper reflexes or perhaps Babinski's reflex. I am putting a utube video of how clonus manifests itself in the ankle (it is usually present in joints rather than the long muscles). Towards the end of the videio the doc simulates spasmodic up and down motion of the foot. Clonus presents itself in rhythmic spasms usually involving the ankles and/or wrists usually. My clinic doc says if the jerking movements or spasms are necessary to diagnose clonus as a symptom.
16.Neurologic Exam -Reflexes and Clonus - YouTube

 

[bigmark1954]

My explanation of clonus got sent to the mods.......here is a better example of what clonus is.
Clonus - YouTube

 

[affected]

Great videos Mark!

Just musing here now on what I watched happening with Chris as you have me thinking about it all in that context.

One of Chris's very early symptoms was jaw clonus. It would happen (before he started slurring his speech even) when any breeze would touch him, even a warm breeze.

Around 12 months later when he was diagnosed, the neurologist called 5 other doctors into the room to watch and have a go with the little hammer at producing the clonus response in his jaw. They seemed to find it fascinating, but didn't bother to really explain to either of us what it was all about. I had to research it myself later :?

Now I'm wondering about the leg clonus he developed in the last few months. His entire leg would jerk rhythmically like that ankle in the video, but it seemed to be mostly the larger thigh muscles, so I wonder, with what you said about the joints if it was coming from his hips. It wasn't in the lower legs even though he had a babinski response for some years before we knew anything was happening to him. I didn't know then about babinski, we just used to laugh at his incredible foot reaction to suddenly being touched at all. It was classic babinski in every aspect. Ironic how you can think something is just 'how that person is' until you find there is a name for it and that it is an indication of something very wrong.

The clonus in his leg would trigger when we would get him ready for a standing transfer, and I would have to just slightly reposition his leg to help it stop. That's what makes me wonder about the hips as it would be as I would get him to sit forward. When doing this from the hospital bed his knees would be far straighter than when in a chair and his feet were not even on the floor, so I don't think it was the knees.

In the last weeks it could start once we got him on his feet and was really scary as his legs were so weak, so keeping him upright and helping reposition the leg a little was a trial. By that point he was no longer walking at all, just some standing transfers but mostly hoist transfers.

As a CALS it was often a weird mix of watching something like this with real interest, fascination even, and also incredible dismay at what was happening to his body.

 

[danni1983]

Thanks for the responses. This only happens in my mums right foot,no other part of her body,and only happens when she stands,it doesnt happen when she is just sitting. Very strange. I agree with you Tillie,definate mixed feelings when watching your loved one xx

 

[gooseberry]

Tillie and Mark, they feel Stage's muscles after they use the hammer thingy and have diagnosed clonus in his upper arms. They said the muscles are contracting repeatedly well past what is normal even though his joint doesn't flail. Its weird.

 

[affected]

Gooseberry, that's how it appeared when I would watch Chris's leg clonus, it didn't appear to be connected to any joint, though I never watched it thinking in that way. I was more concentrated on stopping it as it was distressing for him and had to be stopped in order to attempt a transfer.

Odd how differently one looks back at some of these things.

 

[gooseberry]

I didn't know what it was...I asked about spacticity. But was wrong. His other arm basically has zero reflexive response now. It's so sad. Sometimes I don't want to know.

 

[Barbie]

my husband's clonus is not as slow or loose as Mark's video. his whole leg will just gently bounce for ages. and the bouncing is very fast. only in one leg always. his is also associated with extreme spasticity in both legs when the clonus starts. As his leg muscles have decreased the spasticity has also.

He also has extreme spactisity in his ankles and that turns in his feet and gives him "ballerina toes" . he does stand, but there is no way his heel is going down. it is actually up on his last two toes and the outer edge of his foot. Ouch! looks horrible and I always work someday he will fall and break an ankle.