Transient spasticity

[Tedstehr]

I first noticed foot drop in January on my right leg and ankle causing a pronounced limp. But a few times I have had spasticity in both legs that has made it very difficult to walk. So far, this stiffness has gone away after a few minutes or hours but it feels like it is happening more often lately.

Please let me know if you have had the same transient spasticity, and if so, did it stay that way or become permanent? Of course I am worried because this condition greatly affects my mobility and, as embarrassed as I am to admit, makes me very self conscious walking in public.

By the way, I took my first dose of Baclofen tonight.

Thanks!

 

[Kristina1]

Mine is not as severe as you are describing, but my right leg has restriction (that's what the neuro called it, but that stiffness) that comes and goes. Meanwhile my left leg is floppy/low tone, but how floppy it is definitely fluctuates. I can't answer your question about permanence though, because this is fairly new for me also.

 

[KarenNWendyn]

I also get spasticity that seems to come and go, but is increasing in frequency. I notice it in my hands and in my facial muscles. I also just started Baclofen, but plan on increasing dose slowly to help tolerate it.
Let me know how it goes for you.

 

[Tedstehr]

Thanks for your responses Karen and Kristina. This morning I felt the same urge to stretch when I was lying in bed that usually results in tightness/stiffness when I start to walk. But lo and behold, I walked more normally than I have for a month when I got up! I have been very tired during the day so I hope the Baclofen doesn't render me a zombie because I am liking this!

 

[KarenNWendyn]

Hi Ted,
Thinking a bit more about your original post in terms of feeling embarrassed and self-conscious --- this is likely something that all of us with disabling neurological disease have to deal with at some level.
Just know that ALS is not your fault. You did nothing to bring on this disease which has rather undignified manifestations.
I've thought about getting a T-shirt which says "I have ALS, what's your super-power?" Don't know if I would wear it out of the house though, but it might give me a small sense of control.
I'm glad you felt better after a day of Baclofen. Hope it continues to work for you.

 

[bigmark1954]

Ted....I am still self conscious and embarrassed by the way I walk and the fact that I can't speak legibly. I am to self conscious to use my walker, so I use arm crutches and have falls cuz of that.

Baclofen is more for cramps than spasticity. That is my understanding, I could be wrong. I tried Baclofen and it relaxed my muscles to the point that I fell more often, so I quit taking it.

My spasticity started in my ankles and now it is in my arms and really body wide. I kind of bounce when I walk because of it and use the arm crutches cuz my arm go back and fourth when using a cane.

This disease will strip you of your dignity and in time and you will look at your life from a survival dynamic.

 

[Nikki J]

Baclofen is an antispastic. It does relax muscles so maybe it helps cramps but not the primary indication

As Mark says sometimes relieving the spasticity causes increasing weakness because the spasticity was keeping you upright. It can be a balacing act to get the dose and timing right if you are both weak and spastic- my sister had that experience

 

[Tedstehr]

Thanks Nikki, Mark and Karen.
I never thought poorly of anyone who had trouble walking so I should not assume others think anything about me. But from what you say, I better get prepared for much worse!

Nikki, I am fortunate that I have not lost much strength in my legs, let alone anywhere else. So relieving the spasticity is the magic bullet - with Baclofen I still limp but that is all as the lack of control is just in my right leg. I know this is somewhat temporary so I will treasure it as a last reprieve. I have been renovating an attic bathroom which means walking up and down stairs multiple times carrying tools and materials. If this lasts through the renovation (just finishing the taping and muddling around the new shower enclosure) it will be wonderful, but longer will be better.

Thanks again all, knowing you are out there means a lot to me.

 

[Nikki J]

Ted it seems as if those who are UMN dominant as you seem to be tolerate activity better but please pace yourself. My clinic says if it takes more than an hour to recover from an activity it was too much. I truly believe pushing too hard can accelerate progression.

You may already be doing this. If so, forgive me for nagging

 

[Tedstehr]

Thank you for concern Nikki. I am glad you mentioned UMN dominance, this gives me better insight into my case. I promise to pace myself!

 

[Atsugi]

<deleted by user. No offense intended.>

 

[KarenNWendyn]

Mike, I like how you just tell it like it is. I have found so many of your comments in this forum helpful and inspiring.

 

[Tedstehr]

Mike, I am not sure what you wrote but it very difficult to offend me! I have always see the humor in everything!

 

[Clearwater AL]

Ted, concerning the Baclofen. Keep a solid regiment taking this medicine. I take it every 8 hours. I am taking 30 MGs three times a day. Maybe the pump is next. Fortunately I have no side effects and it has worked well for me... I hope as you adapt to it - it does the same for you.

Like others have said in so many words above... get over the embarrassed thing in public how you walk. Think of the members here who can no longer walk. It was so hard for me to go to the walker and before that the cane. It is what it is.

PS This could be debated but... cramps are tendons, Charlie Horses are muscles.

Three years ago I would get Charlie Horses that nearly brought tears to my eyes. I would try and walk (hobble) one off but... if I was laying in bed in the morning and I'd get that unintentional morning stretch as you do when first waking... I'd get them in both legs and no way to walk them off. Now... I very seldom get the urge to stretch anything. Again... hope the Baclofen helps.

 

[Tedstehr]

Al,

Are you still walking with the walker? When you say "seldom get the urge to stretch" do you think that is the Baclofen or a progression of the disease?

I wish you a slow progression my friend!

Ted