Odd, but good?

[ShiftKicker]

Hello all-
Over the last few weeks I have experienced a pretty drastic reduction in spasticity. I have not increased my medication, nor changed it in any way. I am still "weak" and wobbly, but I feel less stiff and am not walking like a robot on my left side. My physio thinks my other leg appears to be affected by motor issues now and it's evening out my gait a bit. It's all so subtle that I can't contradict him, but I am just so stoked to not be feeling pain and be listing to port all the time.
Has anyone else with pure or primarily UMN issues experienced a drastic drop in spasticity like this? If so, what do you think was the cause, because I am all for continuing to do it- if only I knew what it was.

 

[Tractor Boy]

Shift, are you using a Baclofen pump? If not, what meds are you taking?

If you figure this out, please share! TB

 

[ShiftKicker]

TB, I am not taking Baclofen at all. It did not reduce my spasticity and actually seemed to increase it, while also compromising my breathing, energy and voice. I was on it a good long while (80mg/day for 6months) before reducing it gradually to nothing about 3 months ago and I feel much better now.
What I am taking currently is:
Lamotrigine- mood stabilizer (though it has also been used in some ALS trials with indifferent results, I gather)
Benedryl- sleep assist
Cannabis-only at bedtime, for both sleep and spasticity reduction (I take just the straight dried bud orally- a very tiny amount- about the same volume as 2 grains of rice)

The above has been for the last 3 months with no change. My reduction in spasticity has been for about 2 1/2 weeks. I don't get it, but I'm going with it. I was wondering if it's something other people with PLS have experienced. Weakness, wobbliness and twitches are all still there and very slowly spreading, but the spasticity is extremely minor now. I don't have another ALS clinic/EMG appointment till 24 November, where I'm hoping they tell me MND/PLS is off the table and I am a miracle, go away and never darken our door again.

 

[billbell52]

I know when I first experienced walking problems I would have a roller coaster effect on spasticity. It would be very tolerable at times and very severe at others. Over the years it sort of normalized to an average amount with minimal extremes. I have never heard of a dramatic reduction that seemingly occurred for no apparent reason.

 

[IhavePLS]

Hi SK,

I hope you are well -- all things considered!

My spasticity fluctuates -- it's clearly worse after sitting and walking (I assume this is true for everyone?). Sometimes, I don't even notice it -- but I don't believe it's ever dissipated completely. In another thread, a few folks mentioned a "humming" sensation that spasticity brings -- while I feel that sensation often, it most often feels as if I'm wearing very tight socks (parenthetically, I always remove my socks when I have this tight sensation).

If you are experiencing flaccidity instead, SK, you really should let your neurologist know this.

I should add that the fact that you still have weakness and balance issues - even without spasticity - still points to the longer-term effects of chronic spasticity: Weakness and resultant balance issues.

So the absence of spasticity -- whether temporary or permanent -- doesn't mean that the underlying problem has somehow been resolved (as much as you might wish it was -- and we do wish that for you, by all means!)....although a day without spasticity would be a really good day.

Please do keep us posted!

Mike

 

[Green Queen]

SK, everyone tells me how much better I'm walking these days, my doctor included. He stands outside his consulting room and watches me walk. It used to distract me terribly! He said he's noticed over time, I've changed how I walk. I swing my leg more apparently. I guess it's true, I only use my stick when I'm really tired these days.
I truly hope yours has improved, not just something that you have adjusted to.
God bless, Janelle x

 

[ShiftKicker]

Thanks all for the encouraging words and unique and qualified feedback. I was under the impression MND was a steady degeneration and this experience is more of the rollercoaster (thanks for the description Bill and Mike) or stop and start variety. My spasticity has not completely disappeared, just been reduced to much lower levels than what it was a few weeks ago. It may be all relative and I just got used to a much higher level and now it's just a little lower. Heck, I don't know. Things just feel looser and I'm all for it. I will definitely speak to my neuro in November about the reduction, Mike. She was the first person to tell me that she wasn't all that impressed with Baclofen as a treatment for spasticity- so I think she'll be interested in my improvement without it.
Someone else mentioned the change of season being a possibility, which I had not considered. It is MUCH cooler here, and considerably more humid than this past summer- we just came out of a 6 month drought, and our climate is normally described as "temperate rainforest". Though my arthritis has been nonexistant, which has been nice. This weather change is a serious consideration, as I hate the heat as a general rule and always feel more relaxed in the Autumn months. Maybe this? I am also a bit more...resigned and less stressed out about my final diagnosis. For the longest time I was to-ing and fro-ing to various specialists and getting tests, etc, etc and trying to qualify and quantify what I was experiencing to my doctors and trying not to feel like a crazy woman. Although it seemed like forever at the time, there are those on this board, who have experienced YEARS of wondering and testing and frustration. I can only imagine how that may have affected the progression of their disease. The pressure is off there- I have been told by multiple doctors and therapists it is NOT all in my head (though, technically it kind of is) and that what I am experiencing is real and profoundly life changing. It's strangely comforting- which, if I really analyze that, is kind of crazy in itself. Anyhow, my stress about diagnosis has gone down now, and I'm sure that may have an effect on spasticity. Which makes sense, as it definitely comes back briefly when I get angry or excited (watching sports is a whole new experience now- I worry, hockey season is almost upon us).
Janelle, I'm glad you don't need to use your stick as much. Do you think it's because you have adapted to your spasticity, or do you think it's because of something else? My gait had improved too, and my physio thought it was because my other leg was becoming more affected and was "evening out". I'm not sure I believe that- I think people are incredibly adaptable and will find the most efficient way to do things given enough time.
We're an interesting bunch, confronted with some pretty serious issues. I am constantly amazed at the humour, positivity and encouragement everyone finds on this board.
Fiona

 

[Green Queen]

Fiona I definitely think I use my stick less because I have adjusted the way I walk.
Everyone tells me that my walk has 'improved'. It never improves, I just change the speed, swing, length of steps etc. I must say though I don't notice I've made these changes unless the doctor or one of my kids tells me.
I do know that I have become extremely slow. I used to have to slow down for everyone, but now I have a hard time keeping up!
God bless, Janelle x