Kcguy2017
14-06-17, 16:59
I posted a few days ago about my ALS fears. This story has a happy ending, but I'll give some background first.
My symptoms started with me not being able to use my left pinky and ring finger very well while typing. They just wouldn't hit the buttons right, and felt weak. I didn't worry immediately, but after a few days, I started to worry, and for some reason the first thing that came to mind was ALS. Shortly thereafter, the twitches started all over my body. Then feeling weak in other places. In particular, I felt the weakness was moving to the inside part of my left hand and the original weakness seemed to be getting worse. Then feeling like I couldn't talk very well. Twitches in my tongue and lips. I've been doing all sorts of random strength tests, reading constantly about symptoms, posting to this forum, working myself into what peaked yesterday as near-debilitating anxiety. The more I worried, the worse the symptoms got. This went on for about three weeks.
I saw a neuro yesterday. She confirmed objective weakness on the outer part of my left hand. All other portions of the exam were normal. She said ALS wouldn't have even been on her list of considerations if I hadn't brought it up. But she agreed to schedule me for an EMG and to investigate the hand. That was supposed to take place next week.
I got a call this morning that the EMG doc could fit me in today. The place where I did the EMG has an actual neurologist conducting the EMG. Not a tech. He is one of the Drs in town who actually gets the people who likely have, or do have, ALS. In other words, he knows ALS. When I told him my symptoms, he told me "point blank they do not sound like ALS" -- even with the objective weakness in my hand. He agreed about the objective weakness being there, though. So that made me a little bit nervous. I asked if, after the test, he would let me know his thoughts. He said probably not. He likes to go over the results first, and to make sure he's not missing anything. Then he sends the report.
But . . . after the test, he said it was completely normal. He said it was so clearly normal, he had no problem telling me so, and he said that's what his report would be. No ALS. And in fact, nothing else abnormal that could point to another problem.
The reason I wanted to post this is to help some others who are going through the same thing. I hope my story is particularly compelling given that I had objective weakness. Even with that symptom, it doesn't mean ALS. Nor did all the other subjective symptoms. I have to go back to my "normal" neuro to follow up on this weakness in my hand. Probably an ulnar nerve issue caused by any number of things. And even after getting the good news, I'm still having the twitches. I don't expect the other symptoms to disappear immediately. It will take some time. But I plan to go on with my life as though nothing is wrong, because that's the case.
Our minds can do crazy things to our bodies. If you've never heard of Dr. Sarno, look him up. He specializes in psychosomatic symptoms -- mostly pain. But he has quite a following and there is a website devoted to his studies (lookup the tms wiki). Although he focuses on pain, his ideas aren't limited to it. He's a retired NYU Dr. So he's not a quack even if his ideas are outside the box.
I'm going to try to stay away from all forums going forward, but I'll be around here a little longer if anyone has any questions.
And Fishmanpa, I'll gladly accept that "I told you so" now. :yahoo:
My symptoms started with me not being able to use my left pinky and ring finger very well while typing. They just wouldn't hit the buttons right, and felt weak. I didn't worry immediately, but after a few days, I started to worry, and for some reason the first thing that came to mind was ALS. Shortly thereafter, the twitches started all over my body. Then feeling weak in other places. In particular, I felt the weakness was moving to the inside part of my left hand and the original weakness seemed to be getting worse. Then feeling like I couldn't talk very well. Twitches in my tongue and lips. I've been doing all sorts of random strength tests, reading constantly about symptoms, posting to this forum, working myself into what peaked yesterday as near-debilitating anxiety. The more I worried, the worse the symptoms got. This went on for about three weeks.
I saw a neuro yesterday. She confirmed objective weakness on the outer part of my left hand. All other portions of the exam were normal. She said ALS wouldn't have even been on her list of considerations if I hadn't brought it up. But she agreed to schedule me for an EMG and to investigate the hand. That was supposed to take place next week.
I got a call this morning that the EMG doc could fit me in today. The place where I did the EMG has an actual neurologist conducting the EMG. Not a tech. He is one of the Drs in town who actually gets the people who likely have, or do have, ALS. In other words, he knows ALS. When I told him my symptoms, he told me "point blank they do not sound like ALS" -- even with the objective weakness in my hand. He agreed about the objective weakness being there, though. So that made me a little bit nervous. I asked if, after the test, he would let me know his thoughts. He said probably not. He likes to go over the results first, and to make sure he's not missing anything. Then he sends the report.
But . . . after the test, he said it was completely normal. He said it was so clearly normal, he had no problem telling me so, and he said that's what his report would be. No ALS. And in fact, nothing else abnormal that could point to another problem.
The reason I wanted to post this is to help some others who are going through the same thing. I hope my story is particularly compelling given that I had objective weakness. Even with that symptom, it doesn't mean ALS. Nor did all the other subjective symptoms. I have to go back to my "normal" neuro to follow up on this weakness in my hand. Probably an ulnar nerve issue caused by any number of things. And even after getting the good news, I'm still having the twitches. I don't expect the other symptoms to disappear immediately. It will take some time. But I plan to go on with my life as though nothing is wrong, because that's the case.
Our minds can do crazy things to our bodies. If you've never heard of Dr. Sarno, look him up. He specializes in psychosomatic symptoms -- mostly pain. But he has quite a following and there is a website devoted to his studies (lookup the tms wiki). Although he focuses on pain, his ideas aren't limited to it. He's a retired NYU Dr. So he's not a quack even if his ideas are outside the box.
I'm going to try to stay away from all forums going forward, but I'll be around here a little longer if anyone has any questions.
And Fishmanpa, I'll gladly accept that "I told you so" now. :yahoo: