Heat and spasticity

[Olivia H]

It's such a strange condition, with my walking worse in warm weather, although it is nice to have warm legs for once.
I'm assuming I'm at the other end of the mnd spectrum, very little spasticity, but floppy toes which I can trip over easily. Makes for high steppage walking 😑

[Zante]

It does seem to affect everyone so differently. Think the spasticity is the upper motor neurons involvement. I know what u mean about high steppage! I fell again today. No broken bones this time but am nursing a sore everything! Gotten me down today and so hoping tomorrow will be a better day x

[AngieCanuck]

Zante, not sure but sounds like progression in your case. I find heat helps so much with my spasticity. My muscle cramps are eased with multiple heating pads, loosening me up. I have heating pads in nearly every room in the house!
I have noticed more and stronger fasciculations since it’s become hot outside. I even had some lately that looked like worms wriggling under my skin. Previously my fasciculations were a few pulses/twitchy jumps in one place and then moved to another place. I found Baclofan didn’t make me feel floppy, and helped so much, but I had major allergic reaction to it (I’m told is rare) and neurologist ordered me to stop taking it. Now I’m taking Tizanidine and it really knocks me on my a**! I haven’t increased dose as prescribed because I would be unconscious every afternoon, and incapacitated (which seems like 1 step forward and 2 backwards, and not effective when parenting an 8 year old, lol)
I hope you get some relief with the Baclofan.
xoo
Angie

[Zante]

AngieCanuck thanks Angie it's so frustrating that medication always seems to come with side effects!
unfortunately I think mine is progression because it was all much better in the warmth last summer. I have the mnd nurse next week so will discuss medication. This morning I burst into tears in the chemist as I couldn't sign my name to collect my repeat prescription ( non mnd meds) . Really upset me something so small.
yes the twitching is odd sensation and is a difficult one because I personally always worry its not pls after all and is als. Sorry just me panicking.
I hope u can make some progress getting the balance right with the medication so that u r able to function daily but also address the need for the medication as well. Thinking of u xx

[shelly21]

Zante don't apologise for what are real concerns. My issues started years ago and one of my team said it was possible pls gone into ALS. But right now its pls for you. Its a battle not to remain in the here and now.

Like the chemist situation, it is deeply upsetting when we realise its another symptom. I try to mourn it quickly and then do something I can do.

x

[Zante]

shelly21 thank you. I really don't know if u get twitching with pls to be honest. Mine jump around here there and everywhere. But aren't bad enough that they keep me awake. Still haven't noticed any atrophy.... and am not about to get a tape measure out to do some comparison as would rather not know and am sure our limbs could be naturally different anyway!
yes like u said it's so upsetting when u realise there is yet something else u can't do. I found that really hard today. Trying to still come to terms with it all and I don't think I properly have yet.
u got any plans for a cornwall holiday?! Am hoping to go for a break away with my dog in September before it becomes more difficult. I think I hoped the spasticity would have disappeared for this summer or gotten easier more realistically but it hasn't. Thanks for everything. Take care. X

[Ellie]

Oh Zan, sorry to hear that you fell 😟

Think the spasticity is the upper motor neurons involvement.

Yes, that's right.

My body is a tale of two halves - my legs are as rigid as steel poles, my arms are as floppy and almost as thing as cooked spaghetti - a good example of UMN v LMN damage.

Here's to a speedy recovery 🤗🤗

[Zante]

Ellie thanks Ellie. Makes me sad reading how you describe yourself. I hate this disease and am only just in the beginnings. I don't know how you manage to get through everyday and with a cracking sense of humour as well! Admire so many people on this forum.
I don't know how I fell I didn't trip on anything at all. Felt like my legs locked for a moment but my body kept going. Since symptoms began I have had numerous falls resulting so far in broken ribs, concussion, broken eye socket, broken outer hip bone and broken hand. I am now the proud owner of a second hand walking pole!! So am hopeful the list will end there!