I've Got PLS

[Charleso]

I was diagnosed with PLS about 5 yrs ago. I still work full time in sales, drive and live by myself doing much of everything for myself. My wife left me about the time of my diagnosis but not the reason for her leaving. My doctor after all the MRI's and EMG's told me she guessed I had 10 years of mobility. My mobility seems to be a bit more limited. Spasticity, cramping seems to be a bit worse. My right leg is more greatly affected as I drag it much of the time and I have what I've been told is "drop toe syndrome". I have no other symptoms other than the exhaustion I've read about. My left leg gets grately exhausted as it does much of the work compensating for the spasticity of the right leg. I get so tired on a work day I'll usually come home and nap fo an hour. Sleep, theres another issue. Seems I get maybe 4-5 hours then my back aches since I seem to sleep in the same position as if I move the spasticity overwhelms the right leg. I'm a youthfull 60 years old. Was in perfect health all my life until I was given this diagnosis. I tried not to read much on it at the recommendation of my neurologist. I know it's very rare. Not as fatal as ALS. My heart goes out to all those with ALS and their families and friends.

I hear it about 1 in 10 million have PLS. Thus no research or med's to give relief. I also hear, read, since there are so few cases many are different and start in the arms or the mouth affecting speech.

Just joined this forum as I have never before as I didn't want to give my disease life! Not many understand my life and why I know have to live as I do.

Thanks for the open forum.

Chuck

 

[Twinsmom]

Welcome to the forum Chuck! There are several other PLS folks here, and you'll find this a wonderful place for encouragement, info, laughs and support.
Peace,

 

[peter57]

Welcome Chuck to the forum.
i have been diagnosed with PLS and, like you still working full time.
(Symptoms started several years before diagnosed)

It started in my left leg and hand and has progressed to affecting my speech a bit now.

Like you spasticity is my main issue.

Others with PLS on this forum are still working and might reply to your thread in due course.


Cheers and welcome again.
Peter

 

[Tokahfang]

I take Zanaflex to sleep, it makes me less spastic and decreases the pain, with the side benefit of drowsiness. Have you tried Zanaflex of Baclofen to see if it does anything good for you? I found it to be difficult to think if I took it during the day, but the sleep is completely worth it at night! I am glad my neurologist gave me room to experiment.

Welcome to the community!

 

[olly]

hi chuck,welcome to the forum
i have had pls 11yrs now,had to finish work several months after onset.
still mobile around the home,not so much outside.
i take my baclofen with zopiclone on a night to enable me to relax and sleep.
i am a young(in mind and heart)42yr old
good to hear from you.

 

[charlottecorday]

with PLS, are there denervations or atrophy?

 

[DBowman]

Hey Chuck... Just because a physician gives you a time limit on some things doesn't mean that's the way it will be! God is the only one Who knows! You'd be surprised how many people prove the doctors wrong! I have bulbar onset PLS(speech is a little slurred...a little bit o' throat spasms occ. I, now, get around with a variety of aids. I use a rollator walker much of the time. I use a single or quad cane on occasions. I wall and fixture "walk"(know what I mean?) It's not my legs but rather my weakened hips. I have "wooden" feeling legs...no bounce. Since I walk stiffly, this puts strain on my lower back so I usually don't lay on my back too long but toss from one side to the other.
If you put your hand on your lower back is it sore and tender when you push against it? Did they give you a spinal tap to make sure it wasn't MS?
Keep doing what you're doing...keep moving even though it gets more difficult...keep using your limbs to "keep up" the connection between your brain and body parts!
I find Baclofen helps with muscle stiffness...well, it makes you LESS stiff. I, too, have a tendency to drag my toes...I'll get cramps here and there but not too often(thankfully!)
God Bless you and keep you!:!:

 

[TxRR]

Hi Chuck,

Be glad you got this later on in life. Im in my prime at 38 years old. I was diagnosed in 2007 but had symptoms dating back to 2003. I have the leg thing as well. I continue to work and am still mobile. I take 60 mg. of Baclofen a day for spasticity and 20 mg. of Propranolol for tremors. I drink atleast 64 ounces of water or gatorade a day to stay hydrated and that almost eliminates all leg cramps. I stretch my hamstrings daily to reduce spasticity and loosen up my legs which helps me walk better. Other than that I'm just like everybody else waiting on a cure.

 

[Zaphoon]

Hi, Chuck!

Welcome to the fourm! Sorry for the diagnosed you've been given. I have a ddiagnosed of PLS but I think it may wind up being reclassified as something like BFCS. I work full time and take baclofen to help with stiffness and cramping.

 

[Trapped in myself]

Just been diagnosed with PLS don"t know what to think? Seems to have progresses pretty fast so far for me! Really depressed about the whole thing!

 

[olly]

hi,welcome to the forum.
i know of a kelly in nyc who has pls,i think there may be a few others.
progression can seem fast at first,its only to be expected after going from a healthy able bodied person to having a progressive disease.
hopefully things will slow down soon as can ofton be the case.
are you on any meds like baclofen?
take time to read some of the back dated threads as they have some great info.
any questions just ask and we will do our best to help

 

[Trapped in myself]

Thanks for the words of encouragment! I have more weakness and stiffness than spasticity, so the medications seem to make me more off-balance than anything! I've tried zanaflex and clonazepam, but neither seemed to help, I think I'm better without them! Started physical and speech therapy today and hopefully that will help! I'm working 1 day a week and am already on SSD! I'm 39 years old, and in 1 year went from playing ice hockey 2 or 3 days a week to barely able to go up and down the front steps! WOW