And I'm back...

[BlsdMama]

Not without a fuss, mind you. Mayo found an antibody (glycine receptor antibody) and wanted to try several treatments for limb variant stiff person syndrome.

Alas, nope. I felt the fourth trial improved my balance (quite a lot actually) but they can see no improvement, plus, everything has gotten more hyper-reflexive. I am tripping on the left toe now and they tell me my right arm now has hyper-reflexes and they perceive slight weakness. (Frankly I think it's because I'm left handed but I'm probably being crabby about it.)

I got my FIFTH EMG in less than 24 months. That has to be some kind of record. There is flattening in my inner bottom foot and on one side of my calf, so I think they keep really expecting for it to be ALS. Not yet, as of last Friday.

So, I have a few questions for those in the trenches. They suspect, because I can date cramping in this leg back 4+ years, that I am four years into very slow movement and think I have a decent shot at staying PLS. I date it back to the weakness - drop foot - 25-26 months ago.

Anyone care to tell their story of progression? How long from one leg to the other? Or to the arm? I'm curious. It took about all of the two years to notice I'm dropping the left toe just very slightly. But I was boggled by the arm and feel I should have gotten another two years before it moved on. (No idea why I had that in my head.)

I'm having a VERY hard time dealing with the arms mentally. I just thought it would stick lower for a while.

And, finally, how long after onset did you get to keep your ability to speak? The neurologist resident said I might be jumping the gun to record my voice. ALS Clinic (U of Iowa) told me to go ahead and do it. It's something that is a huge emotional hurdle, you know? But it's also something I want to do........

 

[ShiftKicker]

Here's a prior post on progression: https://www.alsforums.com/forum/general-discussion-about-pls/30658-pls-progression-timeline.html

Looking at my own reported timeline on that thread, it's now almost 3 years later and I am still mobile, though slower and even more wobbly. I still rarely use a cane and opt for sitting instead if I'm that fatigued my balance is affected.

No sudden "new" loss, just a very slow and steady progression/reduction in function where everything is just that more laborious and difficult. Hand cramping comes more quickly and I can carry less weight/ repeat motions before complete fatigue renders me unable. My voice is more hoarse and I am instinctively choosing things that don't require much effort to chew- some choking if I am at the wrong angle.

Sounds like they really are keeping an eye on you if you're getting that many emgs in just a couple years. I was similar- I think I had one every 4 months for the first year and a half, then a couple with 6 months between, and now it's been a year since my last. I get another one in January.

Sorry whatever you were trialing didn't work out as you'd hoped. And sorry also that your progression has started in on your hands. Each person is so different it's so hard to predict your own progression based on others' experience- but that doesn't stop one from asking! I know I'm always wondering about other people's experience.

 

[Trippy]

Yes, voice banking is an emotional hurdle (as is all of it) but for me it was something I could do to help myself. It’s not too early! Better to get it done while your voice is strong even though there’s no knowing if/when it may go. I banked with modeltalker three years ago (a laborious effort) and my speech started going a year later. It’s pretty much shot now although I can still speak some words/sentences especially when I hold my nose, which is ridiculous, but whatever it takes.

While I’m glad I banked my voice, I am disappointed with the results. Even though it’s my voice it is very mechanical sounding and awkward in cadence. Guess I expected better. Even the ‘Speak it’ app voices have better quality and rhythm. I wish I spent an equal amount of time recording more phrases in my natural voice and would recommend doing this to anyone who still has strong speech.

I see I posted on that timeline link. I have progressed since then with more spasticity and bulbar stuff. No more swimming and so much I can’t do and need help with. I am fast progression PLS, reached all the PLS milestones in six years. All my limbs are affected, both hands lack dexterity, and bulbar issues (but not breathing issues). I can still move everything and use my hands but all movement is slow and clumsy and I fatigue quickly. I use a manual wheelchair most of the time and a walker for short distances in the house. So far EMGs do not suggest a diagnosis of ALS and I even have muscle thinning in several areas. I’m aware this could change.

On a positive note, I can still use my pedal assisted recumbent trike outside on the property (and pedal pretty hard without the motor with my feet clipped in), can watercolor paint, and there’s always reading, computers, and communicating with family and friends, so there’s still hope and quality to life.

I find it better emotionally to focus on one day at a time..it’s when I project too much and dwell in the future that anxiety sets in. Humans are adaptable with the right physical and emotional support-people on this forum give great testimony to this-though no one would say it’s easy.

Best of luck
Kathy