Been crazy busy with everything since we've been home. Will write over the weekend about the trip.
If you pm me your email, I can send you and your wife a couple of pictures!
Also, when you spoke of your leg symptoms...did your legs feel like you ran 10 miles but you didn't even run 1 step? I am very scared - the only thing holding me together is the normal EMG's - but again - I've read too many times that EMG's don't always catch it.
How were your EMG's? Were they abnormal from the get-go or were they normal at first? Mine have all been normal but these have come from neuromuscular doctors - not exactly ALS doctors - the one doctor who told me that "ALS was his academic specialization" said that NO WAY I have ALS b/c he fully respected one of my other neuros and told me his EMG was exquisite. Yet I sit here today with a really weak right arm. I will follow your lead and continue writing down my symptoms. I just try to believe everyone this site that if your EMG is clean then you're good - but I read all too much that that truly isn't the case. Look forward to hearing from you again - all my prayers to you my friend.
I have been following you for awhile now. I am so sorry man. Reading recently that you are losing the motions in your right arm. I have been going through this for over a year now. And at this point I have no diagnosis through 4 EMG's. The last NCS/EMG I had was with a resident neurologist with the doctor supervising. During the NCS, the resident stopped while shocking my wrist because there was an issue. When all was said and done they said it was a normal variant but my right hand is getting weaker by the day. Could you check my most recent thread and let me know what you think of my symptoms. I feel like I'm losing my right arm - i was right-handed. It kinda just feels like its hanging there. Is that how you feel? Just like your right arm is hanging there taking the ride with the rest of your body? My arm twitches constantly. So scary. Would love to hear from you.
Sorry Paul that you are going through that. You must have been terrified the next day. I like how you wrote, "Having to mourn a loss of a movement which happens all too often now." How true that is. We mourn a loss constantly. How much can a person take?
No I haven't had one, I have been getting a lil more concerned these last few weeks. My left hand it seems it had lost some muscle, base of my thumbs hurt. Left arm/ hand feels weak. Not a nice feeling, I am trying my best not to over worry and taking the advice that this is very rare. I haven't spoken to any of my family really on much what I am feeling, some know I have an MRI coming up or that I am feeling this may be serious. I just keep chugging along as much as I can. Other wise I am still twitchy, sore neck and shoulders and what I spoke of before.
So sorry I haven't responded earlier. I visit on here often, I have symptoms, but I don't fully feel I have ALS. I am going for an MRI soon, the doctor feels it could be MS or a bad case of nerves. I have seen you a while ago on here, I often think of you, this disease you have is so heartbreaking and I am so sorry you are going through this. One thing though, my left hand is getting more clumsy, I drop things more so than usual. If you ever need a friend to talk to on here, send me a message any time and I will check often.
I am right near niagara falls, st catharines.
ive been living with als for almost 5 years now, im in it for the long haul!
sorry you are having such a hard time getting around, im sure you have been told, DO NOT FALL! you get humble real quick with this beast.
wishing you the best.