-
Very Scared, Any Advice Appreciated
Hi everyone. First let me thank each and every one of you for your willingness to help others in your situation. I’ve been having some issues and I would love your opinions-
I’m male and will turn 50 in July. My symptoms first started three years ago, I started twitching in my right thigh- really hard. I could even see it through my pants. Shortly after I noticed I was having random twitches all over with a few recurring hotspots. One year after the twitches began I saw a neuro. I had slight weakness in my left tri due to a pinched nerve which has since been alleviated and the strength is back. I had no other weakness. My reflexes were brisk, no clonus. No spasticity. He ordered an EMG and it was clean.
Now, two years since my EMG, I still have twitches all over my body with a few hot spots. I also notice my startle response is extremely heightened. If my wife and I are in the same room and she touches me without me knowing shes going to touch me I will jump. I also jerk really hard when falling asleep while we’re laying in bed watching TV but it’s weird- once I turn over and spoon her to go to sleep as we always do, I don’t jump. And recently I’ve noticed just random little jerks throughout the day. Then, what has pushed me back over the edge, last week my tongue twitched on and off for a day. It hasn’t really since although I have felt like it was going to a couple times but it didn’t.
As far as muscle weakness, I still can’t detect any. My right bicep is shaped a little differently from my left. I am right handed and my right bicep is flat across the top when I flex it and the left is more of a ball. I can still straight curl a 40lb dumbbell with my right and can almost do it with my left so I’d think that’s about where it should be. But I also notice when I flex my right bicep what looks to be little fascics length-wise but I don’t feel them. I just see them. My left doesn’t do that. I can also squat, deadlift, and bench press the weight I would expect to be able to do.
I have a second EMG scheduled in two weeks but I am losing my mind in the meantime. Again, any insight would be much appreciated.
-
2 Replies
-
I will add that the reflex and jumpiness really concern me as well. I have read and read about them and from what I can tell, a positive Babinski and jaw jerk reflex are usually present in an UMND and I have neither. My babinski is nuetral. I’m pretty sure I have a positive Hoffmans sign in both hands (self testing).
-
Fear is a natural response to the unknown. I think we all become obsessed when our imaginations run wild, so the first thing is to not self-diagnose. Usually an untrained mind will fall upon the most disastrously damning possibilities. I know I did, and probably a majority of others on this site. Let the doctors do that, just remain aware that you have professionals looking into what is going on in your body. Let them to their job. The stress you experience elevates drastically when you self diagnose. When you talk to the doctors, that is the right time to ask ALL of your questions. ALS affects everyone differently, remember that. Nobody here can say if you do or do not have ALS.
That being said, you want to see a neuromuscular trained specialist. The VA sent me to a regular neurologist that shoved pills at me for months on end. He gave me everything in the book, then said there was nothing he could do for me when none of it worked. He then discharged me without a second thought. The idea is that you get to the right kind of neurologist right off the bat. Fasciculations (muscle twitching) can be caused by a lot of conditions. Startle response also can have many causes. I know for a fact that PTSD does that.
The point is that you have to go through a process to figure out what is going on. Do not rush to conclusions because it can destroy your life and happiness. IF it is ALS, it is Gods plan, nothing you do will change that. If it is not ALS, then all the stress and anxiety is for naught, and its not worth going through that if you do not have too.
Log in to reply.