Introduction

[GO2020]

I guess I have lurked around enough. I've been dealing with the usual tripping, falling, spasticity, etc that everyone seems to have since 2019 when I was training for a marathon with my husband. Signed up for an account here to post a question on "could this be als", thought better of it.

In December after running SCA, HSP panels and exome testing which were all negative, I was told it is probably PLS. I will have my third EMG in December 2025.
I think I have read every PLS post over the past month when I logged back in.
I just wanted to quit lurking in the background. I have my first PT and OT appt on Feb 14 at the clinic.

Nice to officially meet you all.

 

[lgelb]

Welcome, and we’ll support you however we can.

 

[rmt]

Sorry you find yourself here, but welcome!

 

[Nikki J]

I am sorry for your diagnosis hoping it stays pls. Fell free to chime in in the general and pals sections as you wish

 

[GO2020]

Thank you. It's a really great forum. Everything I have wanted to ask seems to have been talked about and searchable.

I hope it stays PLS too. I think I was in the HSP differentials for so long that I was taken by surprise when he said PLS and another EMG to rule out Lower motor neuron signs. I was sure ALS was ruled out.
I have clinical weakness in my left foot and left hand but EMG's (I've had 2) have been clear, clonus in both legs and spasticity in the legs and in both hands, my left hand likes to stay in a fist lately, but I can open it the pinky and ring finger stay curled though so thus the OT appt. I've been having a small drool issue in the corners of my mouth and my lip twitches and trembles when I talk and of course the jaw jerk was positive at the last appointment. It all started with my left foot.
I'm walking pretty slow and dealing with some urinary urgency.
I have lots of trips planned with work and the family this year so I'm hoping for some solutions from the PT/OT appointment to make the most of the vacations and surviving airports. We were in Paris last year and that's when it really hit us all how slow I have become. We are a pretty active bunch and it felt awful holding everyone up and honestly not enjoying it the way I should have.

 

[Susan12]

It's nice to "meet" you. I'm sorry to hear your diagnosis.
I was diagnosed with PLS in 2002 when my running and biking times slowed down tremendously within a couple weeks. (I also have a family history of ALS).
My walking is slow and my gait is a PT nightmare- although I attempt to run because the motion feels good.
Oral baclofen helped my stiffness and clonus.
I've been receiving it through a pump since 2004, because I was on such high oral doses that I was having side effects.
The pump improved my quality of life tremendously. It also diminishes the systemic side effects while decreasing spasticity, clonus, etc.
I assume you've tried oral baclofen. Difficulty with side effects?

 

[GO2020]

Thank you all so much for the welcome. I am struggling with the baclofen. Very tired from it. But I feel like the benefit out weighs that for now.
I am excited to hear that you still attempt to run. I had some trips and stumbles in 2019/2020 and I gave it up. I miss that movement as well. I'm not a lover of the stationary bike which seems to be the go to recommendation. I'm looking forward to my PT on Friday and will talk discuss.

 

[ShiftKicker]

If you have the energy for cycling but are concerned about balance/safety, there are recumbent trikes that are fantastic.

Re: baclofen, there are other options here too. There has been some discussion in the PLS subforum in the past about it. Sadly, fatigue seems to be a really common side effect. I found baclofen caused me further leg weakness and amplified swallowing issues, plus caused a really low mood. Tizanidine and gabapentin were better options for me- I took at night. I've found having a decent sleep and better rested muscles at night help with daytime spasticity.

 

[GO2020]

Thank you for the tips about the baclofen especially with the leg weakness. I'm going to ask about trying something new. Also the tips for the bike. To be honest, I don't have much extra energy for anything other than work and kids activities and the dog but I'm also afraid to NOT do anything and de-condition.

 

[Susan12]

If you want to cycle outdoor.
One option for exercise is a recumbent bicycle. There's the recumbent trikes that are great if you have poor balance.

If the dose of baclofen is too high, it can cause muscle weakness, low tone, and no patellar reflexes. -corrected by dialing down on the oral medication or pump.