Cgracey
New member
- Joined
- Nov 21, 2020
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MD
- City
- bethesda
Hello. Thank you for taking the time to read this. I have read the sticky and appreciate how informative it was.
I have been an avid cyclist for 20+ years (I am now 57) and I used to only get calf twitches after a long, hard ride. My kids would freak out when they looked at my calves because you could actually see it - looked like an alien was in there.
As of about 18 months ago, the twitching (both calves) is constant and those muscles are tight, sore and feel weaker to me. It is very disconcerting and distracting. I did see a neurologist a couple weeks ago and she said my physical exam was normal - no weakness. I reported that I do feel weaker lately BUT I can still ride 25+ miles, albeit with MUCH more difficulty, pain and muscle fatigue. As a lay person, the whole question about "weakness" can be confusing. I am learning (from this forum) that weakness caused by ALS is different than finding a 25 mile bike ride "harder" - so thank you for that.
My concern is this: she did order some blood work and an EMG (next month) so now I am a bit worried about these constant calf issues and twitches and the fact that they have become way more pronounced. I don't have twitching anywhere else. Is she worried I may be "developing" ALS? I read somewhere that you aren't really "out of the woods" until 5 years? I wonder if anyone here has read/heard of that time frame? I was under the impression that ALS progressed faster than that but I could be wrong.
Finally, are there any questions I should ask at my follow-up (after the EMG)? I don't want to miss anything and hopefully, put this behind me if all is normal.
Thank you very much for any insight you can provide.
I have been an avid cyclist for 20+ years (I am now 57) and I used to only get calf twitches after a long, hard ride. My kids would freak out when they looked at my calves because you could actually see it - looked like an alien was in there.
As of about 18 months ago, the twitching (both calves) is constant and those muscles are tight, sore and feel weaker to me. It is very disconcerting and distracting. I did see a neurologist a couple weeks ago and she said my physical exam was normal - no weakness. I reported that I do feel weaker lately BUT I can still ride 25+ miles, albeit with MUCH more difficulty, pain and muscle fatigue. As a lay person, the whole question about "weakness" can be confusing. I am learning (from this forum) that weakness caused by ALS is different than finding a 25 mile bike ride "harder" - so thank you for that.
My concern is this: she did order some blood work and an EMG (next month) so now I am a bit worried about these constant calf issues and twitches and the fact that they have become way more pronounced. I don't have twitching anywhere else. Is she worried I may be "developing" ALS? I read somewhere that you aren't really "out of the woods" until 5 years? I wonder if anyone here has read/heard of that time frame? I was under the impression that ALS progressed faster than that but I could be wrong.
Finally, are there any questions I should ask at my follow-up (after the EMG)? I don't want to miss anything and hopefully, put this behind me if all is normal.
Thank you very much for any insight you can provide.