My story
Hi Geo, I am a new member. I am 36 years old and started having symtoms 6 years
ago but like most men was to stubborn to go to the doctor. Finally after having so much
pain in my calf area of my legs and doing a lot of tripping, falling and breaking bones I
decided there was something wrong with me. I was diagnosed 2 years ago by a ALS
specialist at the University of Kentucky. I had all the tests, EMG, spinal tap, MRI, blood tests and other different tests from my local neurologist. My great grandfather was actually the 3rd person recorded in the state of Tennessee of dying from ALS. He died back in 1946, which later was decided that with all his symptoms he had. My neurologist had difficulty in determing my condition. We checked for MS, Progressive MS and ALS. He finally sent me to an ALS specialist who diagnosed me with PLS. I have a lot of pain in my legs 24 hours a day. I have walked with a cane for a year now. I do not have any strength in my legs especially thighs. I cannot be on my feet long at all or pain gets worse and weakness gets worse. I have clonus in both hands and muscle twitches at various places in the body especially from waist up. I retired from work 1 year ago with disability and also with social security disability. I have been very blessed by God in this situation, has taken care of my family financially. My greatest struggle is I have always been an athlete of playing sports and working out with weights. It is hard for me to watch my kids play ball and I just sit there with my cane in hand and watch them. I tell people not to have pitty on me because God has blessed me and I could be so much worse. I know what little suffering I do today is only a short time compared to eternity in Heaven with Jesus with no pain and suffering.
One thing I have noticed is that a lot of websites say that ALS/PLS is not inherited. My first cousin was diagnosed with MS 2 years ago. I have read a lot recently and on this website were a lot of people with PLS have had other family members with some sort of neurological disorder. Looks to me that it is linked in some way. Thanks for listening.