I was diagnosed with PLS in 2011 after about two years of wondering what was wrong with me. I probably had my first symptoms 20 years before that when the right side of my back seized up and my right leg was partially numb and very painful after a hard day of typing. (before all offices had computers) My doctor prescribed pain killers and muscle relaxers and sent me to physical therapy. After a few weeks of PT, I recovered. I had a similar experience 15 years later, and went to PT again. The therapy again relieved the symptoms. I had occasional back pain and problems with dragging my right foot but attributed that to old age and possible arthritis. By about 2009 I had developed a constant limp and described my right leg as feeling like a wooden peg leg. I saw my PC who referred me to a neurologist. He did some denervation testing and a blood test targeting deterioration of the myelin sheath covering the nerves to rule out MS. I think he was on the right track but got discouraged when he wouldn't refer me to the nearest muscular disorder clinic, so I switched neurologists. I also had a CT scan of the head which showed no abnormalities.
I eventually got a referral to the ALS Clinic at OHSU in Portland, OR where I had an EMG that showed no lower motor neuron involvement. I was given the tentative diagnosis of PLS by a young woman, a recent Harvard graduate. She was very knowledgeable but hadn't had much experience with patients and basically told me I could go home and get in a wheelchair and wait to die.
However, life goes on. I always had a very mild speech impediment and started slurring my words early in the progression. Ten years later, at 81, very few people can understand anything I say, I can walk only about 30 feet with a rollator walker, am housebound mainly because it takes so much effort to get ready to go anywhere. I manage the bathroom, get dressed and undressed on my own, and still work a few hours per month. I require help getting in the shower (someone has to lift my right foot) and with nearly everything else. On the brighter side, my general health is good. I've only been seriously ill one time in 10 years and have not been hospitalized.
Every case is different. I seem to be able to keep going by taking a few weeks of physical therapy every couple of years. I'm eligible to have a therapist come to my home. I have two caregiver/housekeepers who are here 2 to 3 hrs. 4 days a week. My long-term goal is to avoid the nursing home.
Jan, I'm sorry you have to be here but am glad you found this site. Best of luck to you.
