Too fast for PLS?

[lightbeing827]

Last October I was hiking on 3-5 mile trails. By the end of November, something was wrong with my left leg. I seemed to be loosing strength. By Christmas I was limping considerably and my leg was very stiff most of the time, especially when it was cold outside. My lack of balance and limping got worse and worse over the next couple of months until I fell at the end of March and fractured my pelvis in three places.
Two months later, I'm trying desperately to just do every day things like cooking, laundry, showering. I can no longer walk without a walker (and barely with one), clean my house, take out garbage, change sheets or make a bed, or cook anything that requires more than 10 minutes of leaning against a counter. The weakness has moved to my left arm now and I get spasms throughout my legs and arm and lower back. It takes me an hour and a half to shower, wash my hair and get dressed with one hand. The past week or so, I have been noticing it moving into my jaw as well as my speech is becoming labored. My doctor has recommended that I get a power chair for mobility.
I have had 6 MRIs, an EMG and much blood work. Two weeks ago they diagnosed me with PLS. From what I have researched, PLS is supposed to be slowly progressive.
Any comments?

 

[Bear1011]

Hi lightbeing, and sorry to say welcome to the community. Unfortunately I can't shed much light on your question. I know that it took about 2 years before my mom was totally wheelchair bound, and over the next couple she lost control of her upper limbs. I don't know how quickly it progressed in my grandfather. I do know the progression of PLS symptoms can vary greatly. My grandfather was invalid within 6 years, but it took my mom about 10. Did your doctors talk to you about the possibility of ALS? I hope someone else here has some knowledge of faster progressing PLS, but I wanted to say welcome and share my experience. Hang in there!

 

[old dog]

My diagnosis is PLS. I progressed rapidly at first but seem to have reached a plateau. Your description of the difficulties you are having and the length of time it takes you to do simple tasks is strangely familiar. Doctors at the ALS Clinic I go to treated me as if they expected me develop ALS although they did not say so. I suspect this was because of my fast progression. Now that I am reasonably stable, the attitude of my neurologist seems to be more optomistic. I think this is because I am not having breathing problems.

There are so many varibles between patients with these diseases that it is impossible to predict how an individual will be affected. The only advice I have is try to exercise enough to maintain your strength and eat healthy avoiding prepared foods whenever possible. Good luck to you!

 

[Nighthawk]

I'm echoing what someone posted on another sub-forum here: "PALS are like snowflakes, there aren't two PALS the disease progress at the same rate", regardless it's PLS or its cousin ALS.
That's true. I haven't seen two similar cases on progression rate. Some progress very quickly whereas other progress very slowly.
Because no one can predict what the progression rate is going to be on a given PALS, that's why you always have to "stay ahead of the game", plan ahead, and make the most of every single day you still have left because you don't know for sure when things are going to get really ugly with this dreadful disease.


NH

 

[AKmom]

Yes indeed everybody is different in progression. I have had pls approximately 20 years . I am just now in a pwc for most of my day starting about 2 years ago. I have learned to let some things go, like scrubbing things to get them clean and haven't been able to vacuum in years. For the things I can no longer do, I have to give it up for someone else to take care of it. Its very difficult to give things up.

Your progression does seem a little fast. Only time will tell if they gave you the right diag nosis. Welome to the forum, so sorry you have to be here.

 

[olly]

Hi,welcome to the forum.
That is quite a fast progression,usually from legs to bulbar it takes several years (me it was 7yrs).
I think a diagnosed of pls is a bit too soon......have you had only one emg?
Praying things slow down for you.

 

[Bad Balance]

My initial progression was similar. Then I thought back and realized that things had been going on slowly for years. I just wish that we had some better drugs.

Hang in there.

 

[Bear1011]

I forgot to add that my mom goes through plateaus and rapid declines in condition. She'll be "steady" for as long as a year, and will then show very fast decline in just a few months. I do hope your symptoms slow down soon.

 

[lightbeing827]

Thank you for your responses. Does anyone have any personal experience with stem cell treatments?
Needless to say, I'm a bit freaked out by all this! I live alone. I don't want to be sitting in a wheelchair totally incapacitated but with my mind still intact. I am seriously researching assisted death facilities so that I have the option to check out when I feel that the quality of my life is no longer there.

 

[Zaphoon]

PLS is very rare. A neurologist working with me believes there may be sub-types of PLS. I don't think all that is to be known about PLS is known. It is sad to hear things are moving fast for you.

 

[billbell52]

So sorry to hear your story. PLS progression varies a lot. Some people are using a walker after 20 years and a PWC after a few years. PLS generally takes 4 years to confirm the diagnosis. In the first few years it can mimic ALS. I was diagnosed after 2 years since I had Bulbar PLS. I was told if it was Bulbar ALS I would be near death by now. Your PLS is certainly progressing quickly. It usually takes several years for your speech to be affected.

 

[RooRoo]

I have had symptoms for just over 4 years. My speech started to slur very early on. I am nearly unintelligible now. I have been diagnosed with PLS since December, but that was after seeing some neurologists for which this was beyond their scope. Once I went to the ALS clinic here it didn't take long for a PLS diagnosis. Everyday I feel something progressing. Everyone is very different. Try to enjoy each day like it's

the gift it is. I know it's hard not to worry, but that is a waste of time!