twospeed99
Active member
- Joined
- Jul 23, 2005
- Messages
- 33
My brother at 13 yrs (early 1980's)had muscle wasting start and is now at the point of hands and forearms wasted, some muscles in legs and back gone.He went from a teenager to now not knowing what he had but this year they finally diagnosed ALS at age 38.He still walks drives, camps and fishes and really has shown no signs of degradation in the last 15 years other than what he has.I recently had trouble with my thumb, thinking carpal tunnel I went to my GP but before I got my apt it got better but I kept the apt and mentioned the thumb problem and my brothers als, my GP sent me to a neuro who examined me and did a NCV and EMG.He says he see's muscle wasting in hands, NCV normal, EMG abnormal with same results as my brother he say's, he did thumb muscle on one hand (20 minutes) and has diagnosed me with ALS.My first thought was am I going to die (I'm 42 with 8 yr old twin boys and a 5 year old princess).He told me it was mildly progressive ALS and he did not think it would kill me, shook my hand and said have nice day ?.I waited a week than made a apt with my GP to hear report, I have muscle wasting in hands,he says he thinks I've had als for sometime,abnormal emg, no sign of wasting anywhere else in body.I asked my GP if this was gonna kill me in a few years and he said no that it might effect me badly when I'm 60 but I was not going to die from it in the near future.Well since this diagnoses my mind has given me more symptoms than I have ever had naturally, at least I hope it's my mind.I just hope my als follows my brothers path and I get to see my kids grow, I'm still working in a labor intensive job and really have no problems other than my mind ( the thumb has never been a problem since).They have me setup for a MRI in 3 weeks than he said he's like to send me and my brother to the ALS clinic in Vancouver.It seems my mind can bring on symptoms (twitches,shakes,sensed weakness) one day but the next day when I'm feeling up they are gone.What a wild disgusting ride this has been.It seems the symptoms move around and come and go from day to day.Truthfully I am bigger muscle wise now than at any time in my life, my weight is steady and looking at pictures from the last 15 years this is the best and biggest I've ever looked, my hands truthfully look no different now to me and my wife than they did 5, 10 or 15 years ago.Could one emg test on one muscle diagnose als and could my mind be hijacking my body because of their diagnoses, can emg's give false abnormals and because of my brother their just being lazy, when I get my mind thinking positive and up beat I feel good but then I look at my family and get so scared I start to feel weaknesses that are not there the next day.I wonder if I could have had a milder case as a child than my brother and that is the damage he see's on the emg now.What would the odds be of my brother having childhood als me having familial als but getting it in my adulthood, lots of this just doesn't make sense.