worriedaboutit
New member
- Joined
- Aug 10, 2021
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
Hi I appreciate that this forum is monitored by all of the pALS and cALS and express my absolute greatest sympathy to all of you and greatest wishes that better treatments are found and soon
I have been having some symptoms for a few weeks that are really panicing me
I am a totally healthy 37 year old guy and have had extremely long standing cramping and fasciculations in my right calf (like 10 years) after a climbing injury. It has basically never bothered me whatsoever. The cramps can be a bit painful but whatever, never was a big deal, would just get up and stretch them out when they happened.
Recently, about three weeks ago, for no particular reason I took a video of my right calf fasciculating after cramping and sent it to my dad (who is literally an ALS neurologist) and he was a bit concerned to see it and called me asking about weakness, atrophy, etc. I told him no, I didn't have any of this and I didn't really feel any concern about the issue, thought he was just worrying, and told him I'd had it forever and no problem.
The next day I did an 80km bike trip with a heavy pack which totally wiped me out. And after that trip my fasciculations have been constant to the right calf and have started to be constant in the left calf as well. I have also been noticing them on an intermittent basis in other parts of my body - both arms, my face, my back and shoulders. This and my dad's worry got me going down the rabbit hole a bit and I started doing what I usually do when I have any kind of question I don't know the answer to - type it into google. And quickly discovered that (according to google) the primary explanation for fasciculations is ALS.
I of course told my dad about this, he tried to reassure me, even flew out to see me and did a clinical exam which he stated was totally not consistent with ALS and plans to see me again soon. Basically indicated that there is absolutely no indication of ALS, that it doesn't whatsoever make sense with the onset of symptoms, that fasciculations are absolutely omnipresent in healthy people and there are many other illnesses that can cause fasciculations (ie. benign fasciculation syndrome). That he personally had a friend and neuro colleague who had to drop out of his training for 6 months because he started having fasciculations and was absolutely convinved he was going to die (and who is now totally 100% fine)
And this was reassuring for sure, but I still have been constantly reading about ALS, reading about stories of people diagnosed with ALS. I read a story of someone who had cramps and fasciculations and ended up getting diagnosed with ALS and literally the next day I started spontaneous having cramps - in my left upper extremity! These have gotten worse over a few days and now my left shoulder, back, and biceps feel quite prone to cramping which is a totally new thing for me. It sounds like it must be in my head but can your head do that?? Make you have cramps?
I have been thinking through my whole life, wondering if I should be making plans for next year, wondering if I should cancel the plans my girlfriend and I have been talking about to have a kid together (or do it sooner??). I am someone with basically no prior health anxiety or really much anxiety of any kind. But I am still super worried that I will continue to notice progressive deficits over the next few months and that this is just a weird and rapid presentation of ALS. I feel like while my anxiety is clearly significant and is probably not helping I can't believe that it is the sole cause for all the symptoms and visible signs I am having!
I am sorry for my rant!
I have been having some symptoms for a few weeks that are really panicing me
I am a totally healthy 37 year old guy and have had extremely long standing cramping and fasciculations in my right calf (like 10 years) after a climbing injury. It has basically never bothered me whatsoever. The cramps can be a bit painful but whatever, never was a big deal, would just get up and stretch them out when they happened.
Recently, about three weeks ago, for no particular reason I took a video of my right calf fasciculating after cramping and sent it to my dad (who is literally an ALS neurologist) and he was a bit concerned to see it and called me asking about weakness, atrophy, etc. I told him no, I didn't have any of this and I didn't really feel any concern about the issue, thought he was just worrying, and told him I'd had it forever and no problem.
The next day I did an 80km bike trip with a heavy pack which totally wiped me out. And after that trip my fasciculations have been constant to the right calf and have started to be constant in the left calf as well. I have also been noticing them on an intermittent basis in other parts of my body - both arms, my face, my back and shoulders. This and my dad's worry got me going down the rabbit hole a bit and I started doing what I usually do when I have any kind of question I don't know the answer to - type it into google. And quickly discovered that (according to google) the primary explanation for fasciculations is ALS.
I of course told my dad about this, he tried to reassure me, even flew out to see me and did a clinical exam which he stated was totally not consistent with ALS and plans to see me again soon. Basically indicated that there is absolutely no indication of ALS, that it doesn't whatsoever make sense with the onset of symptoms, that fasciculations are absolutely omnipresent in healthy people and there are many other illnesses that can cause fasciculations (ie. benign fasciculation syndrome). That he personally had a friend and neuro colleague who had to drop out of his training for 6 months because he started having fasciculations and was absolutely convinved he was going to die (and who is now totally 100% fine)
And this was reassuring for sure, but I still have been constantly reading about ALS, reading about stories of people diagnosed with ALS. I read a story of someone who had cramps and fasciculations and ended up getting diagnosed with ALS and literally the next day I started spontaneous having cramps - in my left upper extremity! These have gotten worse over a few days and now my left shoulder, back, and biceps feel quite prone to cramping which is a totally new thing for me. It sounds like it must be in my head but can your head do that?? Make you have cramps?
I have been thinking through my whole life, wondering if I should be making plans for next year, wondering if I should cancel the plans my girlfriend and I have been talking about to have a kid together (or do it sooner??). I am someone with basically no prior health anxiety or really much anxiety of any kind. But I am still super worried that I will continue to notice progressive deficits over the next few months and that this is just a weird and rapid presentation of ALS. I feel like while my anxiety is clearly significant and is probably not helping I can't believe that it is the sole cause for all the symptoms and visible signs I am having!
I am sorry for my rant!