New Introduction

[taliaric]

Hello Everyone,

I posted in the Intro section, but Nikki suggested I post here in that not everyone reads the introduction section I had also previously posted in the is this als? section as the neuromuscular team tried to piece together what was going on with me. Today after being in the hospital a second time for dysphagia and having my diet downgraded to pudding textures, discussing a feeding tube down the road and having all my testing re-run, they suggested they are thinking this is PLS, but they will have to continue monitoring me of course. My symptoms began with dysphagia and progressed to slurred speech with weak tongue and and weak neck muscles. They thought I had tongue fasiculations, but that turned out to be a side effect to a medicine I take as my bulbar EMG cleared me of that as well as of any lower neuron involvement. My neuro exam shows upper motor neuron signs, but they haven't been able to find any explanation for any of this in my MRIs, bloodwork, etc. I feel very well tested at this point!

On a personal note, I am 39 years old, married, and the mother of an 8 year old little girl who is adopted from China. She keeps us very busy!

I do have a question about cramping. When I wake up in the morning both of my feet are so cramped that I have a hard time walking on them and then eventually it calms down. Having been in the hospital for a number of days and in bed most of the time, my feet are cramping now during the day as well. Is this possibly related to the PLS or is this just some weird quirk with my feet? I didn't know if it was worth mentioning or not at my next neuromuscular appt. I don't want to sound like a total worrier.

Thanks,

 

[Schmutz]

'Sorry you have to join us but - Welcome.

I would definitely mention it to your neuro. There is a lot they don't know about PLS but my neuro, who admits not knowing all the answers, has made some recommendations that have helped.

My legs are weaker when I get out of bed in the morning. Not cramping - just weak. I do leg bends before I try to walk. 'Same before I walk to the bathroom at night.

'Hope you can get good advice from your neuro, but checking in here you'll find lots of help, as well.

Anne

 

[Mike in Maine]

Welcome to the club, sorry you had to join. I also get real bad cramping mostly in my hands, arms, mid-section and legs (pretty much all over). The only thing that keeps it under control is Baclofen, it you’re not on it yet you may want to ask your Doc to try a low dose.

Mike

 

[billbell52]

If you do have Bulbar PLS it is very rare. PLS is rare, about 50 people get it a year in the US. About 7-14 people get Bulbar PLS. Usually it progresses slowly to your legs and arms. Generally Bulbar ALS progresses quickly so if you have no lower motor neuron symptoms after 2 years it is most likely PLS. I have Bulbar PLS. Is your balance affected? Your feet do strange things to try to compensate for loss of balance. I would mention it. Even though my symptoms started with speech and I had no balance problems I would get terrible leg cramps when I swam hard.

 

[taliaric]

Yes that is very rare! That is a good point about balance and the feet cramps. It does seem to impacted by walking…more walking, more cramps.

 

[IhavePLS]

Welcome (it always conflicts me to say that, because I wish you did not have to post here). You'll find great support in this forum -- everyone here is very knowledgeable (although experience counts more with this disorder, I believe -- the docs have "knowledge," but they understand the disease far less than those of us who live with it on an everyday basis do).

I have more frequent choking spells, and my jaw muscles tire more easily than they used to (when talking and sometimes when eating). I have some weird neuro "trigger" in my jaw (a masseter reflex, as I recall?), so that probably explains these issues.

But my symptoms began in the manner that most PLS symptoms ordinarily do -- and that is in both of my lower legs. I recall feeling as if I was walking in quicksand -- I developed much difficulty walking up only slightly or moderately inclined hills. I could overlook none of these sensations because I had been a prolific runner since my early 20's, and therefore, I was more than used to leg fatigue. All of this was clearly different (the only real similarity being that the weakness, fatigue, and spasticity can sometimes be likened to how the legs feel after running a marathon).

More recently, I've lost my ability to walk as far as I did last summer -- I can only walk about 25% as far as I used to --- and this I do much, much more slowly! Short distances I do pretty well, I think. But the distance is clearly shortening (which I don't really mind, I still enjoy walking all the same).

Again, welcome!

Mike

 

[Dutchie]

I really recognize myself in your story, that's why I decided to reply. I do not officially have PLS but my neuro exams shows upper motor neuron signs too. I recognize the 'stiff feet' story. Do you have these only in the morning or also in the rest of the day?

Take care,

Dutchie

 

[taliaric]

Hi Dutchie,

Initially it was only in the morning, but then it started to become an issue during the day as well. It is not the same every day though. Some days are better than others.

Best of luck,

Jen

 

[kevinw]

Hi taliaric, sorry and welcome to the forum (not sure how to word that). Like "IhavePLS" & "Schmutz" mine started in my left leg, so I also have to stretch before trying to get out of bed, not that I even want to. Once I stretch and force myself up things start working okay until the evening hours, then it is more a weakness issue. I get minor, minor cramps, but not really in my feet. That is not to say don't mention it to your doctor. I sometimes mention things that I have no idea if they have anything to do with anything, I figure it's their job to decide what's important. But, honestly Baclofen might be helping me during the day...I use a walker if I have to get up during the night.

 

[MaxEidswick]

>But, honestly Baclofen might be helping me during the day..

Ditto that!

 

[AKmom]

Welcome to the group taliaric! So sorry for needing to be in such a group, but I am sure you will find reassurance and compassion here. I use to get those cramps in my feet also a couple years back. I still get the occasional spasm in the inside arch muscle in either foot when I stretch or whatever. My toes are pretty much in a curled down position now all the time. My progression started in my right leg with weakness and hyper reflex, then moved to the left. The feet cramps came a few years later for me. I have had PLS for 20+ years, although it took 15+ to get the diagnosis.

Baclofen helps keep the cramps down to a minimum. It used to hurt to walk on my feet when they were up for a while, but since taking balcofen, that is no longer an issue. I do not have much bulbar symptoms yet. They did do a swallow test on me and said it was slightly weak and slow. I do choke if I am not careful (and sometimes when I am careful!). I also will get an occasional cramp in the tongue or cheek (ouch!), but those too have settled since I have upped the dosage of baclofen. My speech has slowed some and as I get more fatigued, I will slur slightly.

I pretty much am using a pwc out of the house, but can still walk very short distances with some difficulty and getting winded. This has been a very slow progression for me. I hope you have a very slow progression.

Definitely talk to your doc about the feet cramps. Most likely is a progression. Baclofen helps, but start at a very low dose if you do decide to take it, and stay at that low dose as long as you can. They prescribed for me to take 60mg a day (3 doses of 20mg) at the beginning. But I found that to be way to much so I only needed to take 1 a day (at bedtime as it tends to make you sleepy if your not use to it). This helped me sleep better. Now here it is, 4 years later (after starting baclofen) and I am 3 months into upping the dose to 40mg a day (1 at about noon was added). Although at night I take 8mg of tizanidine to help keep the sudden muscle cramps from waking me up. Balcofen stays in the system longer than tizanidine and works mainly for spasticity. Tizanidine works for the charley horse type cramps that happen suddenly upon any normal stretching while you sleep.