Hi everyone--
I recently saw a neuro who specializes in ALS to see if they could help me to interpret my "borderline normal" EMG findings and to check up on my situation.
Summary-- started twitching and cramping almost 3 years ago, abnormal weakness and fatigue associated with exertion 2 1/2 years ago, atrophy of thenar muscle 2 years ago. My weakness is worse, but only associated with exertion or weather (after bowling, running "Wii Sports" or being outside during brisk temperatures.) And my atrophy in my thumb muscle is worse, but not dramatically. I've had 2 clean EMGs and one that showed slow nerve conduction in my left ulnar. Still twitch like crazy, everywhere. The bad news is that I'm not strictly a BFSer because I show other symptoms and progression. The good news is that I'm fully functional and have no super-obvious presentation. I should also note that I have other neurological symptoms such as parasthesia and ocular troubles (flickering vision, occasional blind spots, visual snow, after images, etc.) I'm a 27 year old male with a medical history of hodgkins lymphoma
The doctor was reassuring. She told me that if this were ALS it would extremely bizarre and abnormally slow presentation. I know that there are people on this forum who twitched and whatnot for years before diagnosis, but that it is rare.
She told me that the abnormalities found in my EMG were in the nerve conduction part, not the needle. The funny thing is, when I posted my EMG report on here that is what you smart folks told me but my doctor messed up! My original hand doctor who did the EMG said it was found during the needle portion, not the nerve conduction.
She said that I have some nerve entrapment but nothing worth doing surgery over. They didn't see any denervation so that's good. She also said that the strength in my thumbs is great and that it's hard to know if my thenar muscle is experiencing true atrophy. It's weird; there is clearly a huge ridge that shows up whenever I move it as if I'm giving a thumbs up sign, but if you just look at it in rest it appears normal.
She said I should do an EMG in a year and come back and see her if it gets significantly worse. She also wants me to do more experiments to figure out of there is a correlation between my diet and my symptoms.
I am a little put off by the fact that she didn't do any strength tests or evaluations other than my thumbs, but I should be encouraged by the fact that she didn't feel the need to. I'm also concerned because there doesn't seem to be much effort going into figuring out exactly what the hell's going on with me. I'm thrilled that they don't think it's ALS, but I know my body and I know there's something going on.
Anyways, I'm going to try and stay off these boards for a while, unless things get worse and I have questions. Or maybe I'll just pop in to let people who twitch know they have nothing to worry about. Or maybe just to say hi!
Thank you to everyone who has taken time out to respond to my posts. My heart, thoughts and prayers go to all of you struggling with ALS, PLS or any of the debilitating neuromuscular conditions. Not to sound cliche, but your strength is a source of both inspiration and perspective. There are some amazing individuals on these boards. Hopefully the combination of an increased awareness of ALS and the exciting potential of newer medical research will produce some sort of cure to this condition.
Thanks again,
Andy
I recently saw a neuro who specializes in ALS to see if they could help me to interpret my "borderline normal" EMG findings and to check up on my situation.
Summary-- started twitching and cramping almost 3 years ago, abnormal weakness and fatigue associated with exertion 2 1/2 years ago, atrophy of thenar muscle 2 years ago. My weakness is worse, but only associated with exertion or weather (after bowling, running "Wii Sports" or being outside during brisk temperatures.) And my atrophy in my thumb muscle is worse, but not dramatically. I've had 2 clean EMGs and one that showed slow nerve conduction in my left ulnar. Still twitch like crazy, everywhere. The bad news is that I'm not strictly a BFSer because I show other symptoms and progression. The good news is that I'm fully functional and have no super-obvious presentation. I should also note that I have other neurological symptoms such as parasthesia and ocular troubles (flickering vision, occasional blind spots, visual snow, after images, etc.) I'm a 27 year old male with a medical history of hodgkins lymphoma
The doctor was reassuring. She told me that if this were ALS it would extremely bizarre and abnormally slow presentation. I know that there are people on this forum who twitched and whatnot for years before diagnosis, but that it is rare.
She told me that the abnormalities found in my EMG were in the nerve conduction part, not the needle. The funny thing is, when I posted my EMG report on here that is what you smart folks told me but my doctor messed up! My original hand doctor who did the EMG said it was found during the needle portion, not the nerve conduction.
She said that I have some nerve entrapment but nothing worth doing surgery over. They didn't see any denervation so that's good. She also said that the strength in my thumbs is great and that it's hard to know if my thenar muscle is experiencing true atrophy. It's weird; there is clearly a huge ridge that shows up whenever I move it as if I'm giving a thumbs up sign, but if you just look at it in rest it appears normal.
She said I should do an EMG in a year and come back and see her if it gets significantly worse. She also wants me to do more experiments to figure out of there is a correlation between my diet and my symptoms.
I am a little put off by the fact that she didn't do any strength tests or evaluations other than my thumbs, but I should be encouraged by the fact that she didn't feel the need to. I'm also concerned because there doesn't seem to be much effort going into figuring out exactly what the hell's going on with me. I'm thrilled that they don't think it's ALS, but I know my body and I know there's something going on.
Anyways, I'm going to try and stay off these boards for a while, unless things get worse and I have questions. Or maybe I'll just pop in to let people who twitch know they have nothing to worry about. Or maybe just to say hi!
Thank you to everyone who has taken time out to respond to my posts. My heart, thoughts and prayers go to all of you struggling with ALS, PLS or any of the debilitating neuromuscular conditions. Not to sound cliche, but your strength is a source of both inspiration and perspective. There are some amazing individuals on these boards. Hopefully the combination of an increased awareness of ALS and the exciting potential of newer medical research will produce some sort of cure to this condition.
Thanks again,
Andy
