pvale
Distinguished member
- Joined
- Apr 15, 2009
- Messages
- 106
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- NE
- City
- Lincoln
I'm a 53 year old male, still working as an Electrical Engineer, mostly a desk job designing big substation transformers. I haven't been diagnosed with anything yet, but let me tell you what's been happening.
About this time (April) last year, I started having terrible leg cramps at night. Doctor gave me medicine to stop the leg cramps, and for awhile it did. Then last fall, I started falling from time to time. Doctor sent me to physical therapy for an evaluation. Turns out my falling was from my left foot dropping and tripping me. PT people put me in a brace to hold my left foot level. Around the same time, I started getting weak, and found it hard to walk long distances. Doctor sent me to a neuralogist, who MRIed me from my tailbone to the base of my skull. They didn't find anything blatantly wrong mechanical wise with my backbone, no pinched nerves or anything. About Christmastime, I started falling again, and seemed to have little coordination between my feet. I've fallen a lot between Christmas and now, to the point of knowing how to fall now to avoid banging my hips.
At this point, my leg cramps are back with a vengeance. I've lost a lot of muscle mass in my left leg, and my thigh muscles twitch all the time now. My stamina is very low, and the only way I can work is to use a cane and/or a walker. Good thing I have a desk job.
Within the last month, the main muscles in my upper arms have started twitching also.
Dr sent me to another neuroligist he knew who evaluated me and looked at my MRIs. He also said there is nothing wrong with my backbone except a little deterioration that is probably responsible for my occasional low back pain. He said I probably have something degenerative, and made me a referral to the Neurosciences unit at Barnes-Jewish hospital in St. Louis. In the last month I've started having a bit of problem choking on coffee. I drag my left leg badly now, and have very limited movement/control of it. I'm using a motorized three wheel electric scooter at work now if I have to go any further than the copier.
Well, I have an appointment May 28th down there at Barnes, and maybe we'll get on the road to finding what's going wrong with me.
I am certainly not ready to sit back and do nothing, I'll go nuts. So, if it is something degenerative, I'm going to work as long as humanly possible, and my employer will do everything to assist that, even to the point of buying me this electric scooter. It may even be possible for me to do some of my design work at home, with occasional forays into the office for meetings, etc.
Of yea, my wife is a renal dialysis patient who has to have dialysis 3 times a week. But she's getting slowly better, and my soon be able to drive. I hope so, because my driving days may be numbered. I sold my old truck today, because it has a manual transmission, and I just can't handle the clutch any more. Thank God our main, new car is automatic.
So, here I am, dearly hoping it's not ALS/MND and there's something they can do to fix it.
Perry L. Vale
About this time (April) last year, I started having terrible leg cramps at night. Doctor gave me medicine to stop the leg cramps, and for awhile it did. Then last fall, I started falling from time to time. Doctor sent me to physical therapy for an evaluation. Turns out my falling was from my left foot dropping and tripping me. PT people put me in a brace to hold my left foot level. Around the same time, I started getting weak, and found it hard to walk long distances. Doctor sent me to a neuralogist, who MRIed me from my tailbone to the base of my skull. They didn't find anything blatantly wrong mechanical wise with my backbone, no pinched nerves or anything. About Christmastime, I started falling again, and seemed to have little coordination between my feet. I've fallen a lot between Christmas and now, to the point of knowing how to fall now to avoid banging my hips.
At this point, my leg cramps are back with a vengeance. I've lost a lot of muscle mass in my left leg, and my thigh muscles twitch all the time now. My stamina is very low, and the only way I can work is to use a cane and/or a walker. Good thing I have a desk job.
Within the last month, the main muscles in my upper arms have started twitching also.
Dr sent me to another neuroligist he knew who evaluated me and looked at my MRIs. He also said there is nothing wrong with my backbone except a little deterioration that is probably responsible for my occasional low back pain. He said I probably have something degenerative, and made me a referral to the Neurosciences unit at Barnes-Jewish hospital in St. Louis. In the last month I've started having a bit of problem choking on coffee. I drag my left leg badly now, and have very limited movement/control of it. I'm using a motorized three wheel electric scooter at work now if I have to go any further than the copier.
Well, I have an appointment May 28th down there at Barnes, and maybe we'll get on the road to finding what's going wrong with me.
I am certainly not ready to sit back and do nothing, I'll go nuts. So, if it is something degenerative, I'm going to work as long as humanly possible, and my employer will do everything to assist that, even to the point of buying me this electric scooter. It may even be possible for me to do some of my design work at home, with occasional forays into the office for meetings, etc.
Of yea, my wife is a renal dialysis patient who has to have dialysis 3 times a week. But she's getting slowly better, and my soon be able to drive. I hope so, because my driving days may be numbered. I sold my old truck today, because it has a manual transmission, and I just can't handle the clutch any more. Thank God our main, new car is automatic.
So, here I am, dearly hoping it's not ALS/MND and there's something they can do to fix it.
Perry L. Vale
