Kevin

Hi, it sounds like my story. I was first told I had ALS and after a few years I was told it was PLS. I am so grateful for the PLS diagnoses, It is still a difficult disease to deal with but not anywhere as scary as ALS. I had many of the same conditions as you have stated. It seemed to change as it progressed. I can say it is different for everyone. I am thrilled to say that I haven't progressed in 2 years now. I go to a clinic every six months and get tested. I can still drive and live alone most of the time. If you have a wife to help you, you are truly blessed.
My advise is to stay out of fear as much as you can, the stress is very hard on our disease. I just stay as grateful as I can and not go into what might happen. I find it never works out the way I planned and it is always the worse case I have come up with. I feel blessed to have the capabilities I still have.

Candace

Hi Candace...Thanks for the reply. I am starting to see what you mean about looking too far into the future, because boy there is a lot of information that can scare someone. I guess my fear is that it is a preliminary diagnose of PLS, but in the back of all the doctors minds they are thinking of ALS. That's where I just need to take the diagnose for face value and not worry too far ahead. One thing I noticed is as the weather is warming up, my body and legs don't "tighten" up as much as they did when it was 30 degrees outside. I am looking forward to the warm summer weather and hopeing I don't walk like I have casts on my legs as much.

Thanks Again.

Hi Candace,

How long have you had the disease for and what has it affected? Was there a point in time that progression was more rapid and then slowed down?