One--Five
New member
- Joined
- Jun 1, 2014
- Messages
- 5
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Toronto
Here are my issues (I will try to be as detailed, yet succinct as possible)...any comments are appreciated...
March 2013, Out of nowhere, I started to get twitches all over (but primarily in calves, quads, biceps and triceps). They were mostly constant and lasted for about a month, and just as I was getting concerned and considering going to see my Dr., they went away.
May 2013 - I had knee surgery to repair a torn meniscus. About three weeks after surgery, the twitches came back in full-force.
July 2013 - Twitches now constant and not going away. I also notice I have rather severe pain in my left hip. So I make a Dr. appt. Subsequently, the Dr. orders an MRI and schedules neuro appt.
October 2013 - I see neuro. He examines me for about 20 minutes (standard questions and strength testing, but with no NCV and no EMG). Says he is "largely unconcerned". Orders follow-up in three months and says he will then do EMG and NCV.
November 2013 - Have MRI (comes back clean)
December 2013 - While griping about my hip pain, my gf notices that my left buttock (where the pain is) looks misshapen (i.e. drooping and lacking definition compared to my right buttock). I look at it in a double-mirror. She is right. It is quite noticeably drooping and lacking definition.
January 2014 - See neuro again. Have EMG (I should mention at this point that twitches have not gone away and hip pain is worse). Before starting, the neuro asks me "tell me the muscles where you get the worst twitches," to which I reply "primarily left side calve, quad, buttock, tricep, shoulder, and forearm." He sticks all those places (but only those places). If I recall correctly, he probably stuck me about eight to ten times in total. He also does NCV. After exam he says "Truthfully, I have no answer for why your buttock looks the way it does," he agrees that it looks quite droopy/misshapen, but says he doesn't really think it is atrophy because he says it looks roughly the same size, but just "looks different and lacks definition compared to the right one." I also question him as to whether my left leg looks smaller than my right leg. He measures and agrees that it is smaller, but says he thinks it is negligible (it was 1.5cm smaller at bottom of quad just above the knee). He gives me the results of the NCV and EMG and says "everything is normal, likely BFS." He adds, "I am not too concerned about your asymmetry." He then orders a six month follow-up.
February to April 2014. I feel somewhat better. Twitches subside somewhat (but don't disappear totally), and hip pain is less noticeable - follow up with neuro is scheduled for mid-July
May 2014. - BAM! Out of nowhere, like a thunderbolt, everything comes back WAAYYYY worse. For the last four weeks (and why I decided to post this), I twitch in a way that is even more aggressive and constant than ever before. I literally twitch almost constantly and everywhere (though still primarily left side). I now have twitching in arches of feet and palm of hand (which I didn't prior) . Twitching is so bad I have trouble sleeping. Also, I have developed severe muscle vibrations, serious pain/cramps in my left shoulder, forearm, pectoral, and hand. Left leg feels heavy and weak, and the hip pain is back full-force. I cannot describe the transition in how I feel between May 1st and June 1st. The difference is profound. I cannot stop twitching, pain and cramping is abundant, and my left leg and arm feel heavy and weak. In four weeks I feel PROFOUNDLY worse.
Needless to say, I am extremely concerned. Follow-up with neuro is still scheduled for six weeks from now.
Does anyone have any thoughts?
I am unaware if my posting here is appropriate (as I am totally new to this forum), but I did notice that others have posted their symptoms and gotten feedback/information from some of the other members here.
Anyone with more knowledge/experience of these matters than me, who sees fit to respond with any comments or suggestion, would be greatly appreciated.
If not, good luck to anyone who reads this.
Best.
March 2013, Out of nowhere, I started to get twitches all over (but primarily in calves, quads, biceps and triceps). They were mostly constant and lasted for about a month, and just as I was getting concerned and considering going to see my Dr., they went away.
May 2013 - I had knee surgery to repair a torn meniscus. About three weeks after surgery, the twitches came back in full-force.
July 2013 - Twitches now constant and not going away. I also notice I have rather severe pain in my left hip. So I make a Dr. appt. Subsequently, the Dr. orders an MRI and schedules neuro appt.
October 2013 - I see neuro. He examines me for about 20 minutes (standard questions and strength testing, but with no NCV and no EMG). Says he is "largely unconcerned". Orders follow-up in three months and says he will then do EMG and NCV.
November 2013 - Have MRI (comes back clean)
December 2013 - While griping about my hip pain, my gf notices that my left buttock (where the pain is) looks misshapen (i.e. drooping and lacking definition compared to my right buttock). I look at it in a double-mirror. She is right. It is quite noticeably drooping and lacking definition.
January 2014 - See neuro again. Have EMG (I should mention at this point that twitches have not gone away and hip pain is worse). Before starting, the neuro asks me "tell me the muscles where you get the worst twitches," to which I reply "primarily left side calve, quad, buttock, tricep, shoulder, and forearm." He sticks all those places (but only those places). If I recall correctly, he probably stuck me about eight to ten times in total. He also does NCV. After exam he says "Truthfully, I have no answer for why your buttock looks the way it does," he agrees that it looks quite droopy/misshapen, but says he doesn't really think it is atrophy because he says it looks roughly the same size, but just "looks different and lacks definition compared to the right one." I also question him as to whether my left leg looks smaller than my right leg. He measures and agrees that it is smaller, but says he thinks it is negligible (it was 1.5cm smaller at bottom of quad just above the knee). He gives me the results of the NCV and EMG and says "everything is normal, likely BFS." He adds, "I am not too concerned about your asymmetry." He then orders a six month follow-up.
February to April 2014. I feel somewhat better. Twitches subside somewhat (but don't disappear totally), and hip pain is less noticeable - follow up with neuro is scheduled for mid-July
May 2014. - BAM! Out of nowhere, like a thunderbolt, everything comes back WAAYYYY worse. For the last four weeks (and why I decided to post this), I twitch in a way that is even more aggressive and constant than ever before. I literally twitch almost constantly and everywhere (though still primarily left side). I now have twitching in arches of feet and palm of hand (which I didn't prior) . Twitching is so bad I have trouble sleeping. Also, I have developed severe muscle vibrations, serious pain/cramps in my left shoulder, forearm, pectoral, and hand. Left leg feels heavy and weak, and the hip pain is back full-force. I cannot describe the transition in how I feel between May 1st and June 1st. The difference is profound. I cannot stop twitching, pain and cramping is abundant, and my left leg and arm feel heavy and weak. In four weeks I feel PROFOUNDLY worse.
Needless to say, I am extremely concerned. Follow-up with neuro is still scheduled for six weeks from now.
Does anyone have any thoughts?
I am unaware if my posting here is appropriate (as I am totally new to this forum), but I did notice that others have posted their symptoms and gotten feedback/information from some of the other members here.
Anyone with more knowledge/experience of these matters than me, who sees fit to respond with any comments or suggestion, would be greatly appreciated.
If not, good luck to anyone who reads this.
Best.