tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
I am curious on how different PALS progression occurred?
My breathing muscles have been the first to go. At first I noticed difficulty breathing at times when I should not have had problems. For example I was an avid runner and I began to notice that at relatively short distances I was loosing my "wind" much quicker than seemed normal. I chalked it up to humidity, not enough sleep, a cold coming on, etc. Then I notice carrying equipment (20lbs case) across a parking lot that I could not breath. I went to the hospital thinking it was a heart attack only to be told I was fine and to follow up with other docs. Two years later my diagnosis.
My hands and forearms also began going early (all though I did not understand what was happening) particularly the left one. It started when I noticed intense muscle burning in the forearm and hand when driving. I wold hold a hot or ice cold cup of coffee to sooth the pain. Slowly I noticed the muscle in between the thumb and pointer finger begin to disappear. Two Fridays ago I fell and tried to catch myself with my left hand (and my face), and now my hand is clawing and difficult to use.
My legs have held out pretty good. I have visible wasting in both feet and around the knees, it is more pronounced on the left side. My balance has been very bad, stairs extremely difficult, extreme tightness, and the fatigue wipes me out very quickly. I have lost my balance and fell into walls, windows and cabinets (thankfully not to the floor, only the asphalt the one time and that was me being stupid). I get cramps around the hips (getting in and out of the car) and in the thighs and calves constantly. I am assuming it will not be long before I loose my legs but am curios as to how others progressed who did loose the use of their legs?
I am also loosing my ability to sit up, I slouch a lot and when I turn in bed I rely a lot on my arms and legs as my core is just shot. Bulbar wise, choking is increasing and face and neck cramps are on the rise.
I hope by sharing these progression stories that others will be helped by knowing what is happening and planning for what is to come.
My breathing muscles have been the first to go. At first I noticed difficulty breathing at times when I should not have had problems. For example I was an avid runner and I began to notice that at relatively short distances I was loosing my "wind" much quicker than seemed normal. I chalked it up to humidity, not enough sleep, a cold coming on, etc. Then I notice carrying equipment (20lbs case) across a parking lot that I could not breath. I went to the hospital thinking it was a heart attack only to be told I was fine and to follow up with other docs. Two years later my diagnosis.
My hands and forearms also began going early (all though I did not understand what was happening) particularly the left one. It started when I noticed intense muscle burning in the forearm and hand when driving. I wold hold a hot or ice cold cup of coffee to sooth the pain. Slowly I noticed the muscle in between the thumb and pointer finger begin to disappear. Two Fridays ago I fell and tried to catch myself with my left hand (and my face), and now my hand is clawing and difficult to use.
My legs have held out pretty good. I have visible wasting in both feet and around the knees, it is more pronounced on the left side. My balance has been very bad, stairs extremely difficult, extreme tightness, and the fatigue wipes me out very quickly. I have lost my balance and fell into walls, windows and cabinets (thankfully not to the floor, only the asphalt the one time and that was me being stupid). I get cramps around the hips (getting in and out of the car) and in the thighs and calves constantly. I am assuming it will not be long before I loose my legs but am curios as to how others progressed who did loose the use of their legs?
I am also loosing my ability to sit up, I slouch a lot and when I turn in bed I rely a lot on my arms and legs as my core is just shot. Bulbar wise, choking is increasing and face and neck cramps are on the rise.
I hope by sharing these progression stories that others will be helped by knowing what is happening and planning for what is to come.