cshin
New member
- Joined
- Nov 18, 2021
- Messages
- 4
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
Hi everyone,
I'm a 28 yo female and my father passed from ALS at the age of 48.
I understand familiar ALS is very rare and makes up only about 10% of ALS cases, but nonetheless, witnessing the illness firsthand has scared me enough to believe in the possibility of it for myself pretty much all my life. The fear has been the curse...
So it is with a heavy heart I'm writing here. Ironically though, spending time on this forum had me in awe at the persistence of life and the incredible tenacity each of your lives holds -- that life goes on no matter what. It does feel inappropriate to confide on what could be my hypochondria (hopefully) to this group here, but as you can see I can't help myself so please bear with me.
I can't pin down an exact time line, but over the past 3-4 months or so, I've been experiencing some weakness and arthritis-like pain accompanied by twitching, cramps, and fasciculations in my left arm and leg -- cramping and fasciculations in the leg more so than in the arm; the arm only gets twitching and comparatively slight weakness, and the feeling of tightness and occasional twitches only appear in the forearm/wrist area.
An example of a weakness is feeling too tired to hold the steering wheel with my left hand during my 15-20 minute commute to work -- not just a for couple days, but for several days, weeks, still present today, although it feels that the weakness has not gotten worse.
The cramps are more prominent in the left leg, both legs experience twitching and fasciculation every single day, several bouts a day -- not your typical spasms; continuous spasm and jumping for several minutes and the intensity is strong enough you can see an area the size of my palm swirling in waves. I haven't noticed the fasciculation worsening, but the cramps and pain in both calves, especially in the left, have gotten more intense and frequent. The twitching and jumping have gotten more intense and frequent but still localized to the same spot.
I noticed about 1.5 months ago that I keep dragging my left foot while walking -- haven't fallen yet, but have come very close to falling in the shower several times and hard to maintain balance.
Pretty much every single time I walk, I drag the foot and I have to concentrate with much effort to not let it drag.
Left leg also feels a lot more tired in general and not as limber or strong as right -- if I were to lie on the floor and try lifting my leg up, I have noticeably harder time lifting the left than the right. Similarly, I have no trouble lifting my left leg (about a foot off ground) while balancing on right leg, but very wobbly and feels significantly weak when I try to do the same on left. Same feeling of weakness on left leg when try to walk a straight line.
My limbs fall asleep very frequently as well -- pretty much after any kind of physical exertion, like trying to hold a tree pose for and stretching, but also just sitting on the toilet and holding my phone for more than 10 minutes. Flushing down the toilet, pushing or pulling one of those bigger glass doors, or opening a can of soda have also become more laborious and give me arthritis-like pain.
One last symptoms started actually just about 2 weeks ago -- I gagged several times while trying to swallow my meal. I did not vomit, but my throat was labored enough that I was gagging and having a hard time trying to keep the food down. In the past 2 weeks, I've had about 5 instances of this gagging and my throat muscles feel tense at rest, almost like the feeling of a lump in the throat when you're trying not to cry. This sensation is the most intense right after gagging, of course, and does subside overtime, but does not eventually go away.
I have noticed though before the gagging that my neck muscles, specifically on either side of the neck, have been very stiff and taut. When I try to turn my head left and right, the muscles feel pulled and very taught.
Thank you for taking your time to read my long message. Learning here that we survive on kindness from strangers more than I'd ever taken the time to realize.
My father suffered so much more so emotionally than ever physically -- it was as if his life just withered away and he suffered so much for nothing, all alone. Seeing your posts in this community though shifted something in my psyche. I know now that he didn't suffer in vain and that every single second of his life was packed with meaning and purpose. I used to think ALS took those things away from him and his life, but I realize now it didn't and couldn't -- so thank you all for that.
Sincerely,
-- C
PS -- I gotta admit, there is a better chance that all my "symptoms" are nothing but benign and it's my hypochondria I need help with. I'm also just trying to come to terms with just the existence of this illness, something akin to a coming-of-age anxiety if anything...I hope that's the case and that you can talk some sense into me.
Blessings and Peace to you and your loves ones,
I'm a 28 yo female and my father passed from ALS at the age of 48.
I understand familiar ALS is very rare and makes up only about 10% of ALS cases, but nonetheless, witnessing the illness firsthand has scared me enough to believe in the possibility of it for myself pretty much all my life. The fear has been the curse...
So it is with a heavy heart I'm writing here. Ironically though, spending time on this forum had me in awe at the persistence of life and the incredible tenacity each of your lives holds -- that life goes on no matter what. It does feel inappropriate to confide on what could be my hypochondria (hopefully) to this group here, but as you can see I can't help myself so please bear with me.
I can't pin down an exact time line, but over the past 3-4 months or so, I've been experiencing some weakness and arthritis-like pain accompanied by twitching, cramps, and fasciculations in my left arm and leg -- cramping and fasciculations in the leg more so than in the arm; the arm only gets twitching and comparatively slight weakness, and the feeling of tightness and occasional twitches only appear in the forearm/wrist area.
An example of a weakness is feeling too tired to hold the steering wheel with my left hand during my 15-20 minute commute to work -- not just a for couple days, but for several days, weeks, still present today, although it feels that the weakness has not gotten worse.
The cramps are more prominent in the left leg, both legs experience twitching and fasciculation every single day, several bouts a day -- not your typical spasms; continuous spasm and jumping for several minutes and the intensity is strong enough you can see an area the size of my palm swirling in waves. I haven't noticed the fasciculation worsening, but the cramps and pain in both calves, especially in the left, have gotten more intense and frequent. The twitching and jumping have gotten more intense and frequent but still localized to the same spot.
I noticed about 1.5 months ago that I keep dragging my left foot while walking -- haven't fallen yet, but have come very close to falling in the shower several times and hard to maintain balance.
Pretty much every single time I walk, I drag the foot and I have to concentrate with much effort to not let it drag.
Left leg also feels a lot more tired in general and not as limber or strong as right -- if I were to lie on the floor and try lifting my leg up, I have noticeably harder time lifting the left than the right. Similarly, I have no trouble lifting my left leg (about a foot off ground) while balancing on right leg, but very wobbly and feels significantly weak when I try to do the same on left. Same feeling of weakness on left leg when try to walk a straight line.
My limbs fall asleep very frequently as well -- pretty much after any kind of physical exertion, like trying to hold a tree pose for and stretching, but also just sitting on the toilet and holding my phone for more than 10 minutes. Flushing down the toilet, pushing or pulling one of those bigger glass doors, or opening a can of soda have also become more laborious and give me arthritis-like pain.
One last symptoms started actually just about 2 weeks ago -- I gagged several times while trying to swallow my meal. I did not vomit, but my throat was labored enough that I was gagging and having a hard time trying to keep the food down. In the past 2 weeks, I've had about 5 instances of this gagging and my throat muscles feel tense at rest, almost like the feeling of a lump in the throat when you're trying not to cry. This sensation is the most intense right after gagging, of course, and does subside overtime, but does not eventually go away.
I have noticed though before the gagging that my neck muscles, specifically on either side of the neck, have been very stiff and taut. When I try to turn my head left and right, the muscles feel pulled and very taught.
Thank you for taking your time to read my long message. Learning here that we survive on kindness from strangers more than I'd ever taken the time to realize.
My father suffered so much more so emotionally than ever physically -- it was as if his life just withered away and he suffered so much for nothing, all alone. Seeing your posts in this community though shifted something in my psyche. I know now that he didn't suffer in vain and that every single second of his life was packed with meaning and purpose. I used to think ALS took those things away from him and his life, but I realize now it didn't and couldn't -- so thank you all for that.
Sincerely,
-- C
PS -- I gotta admit, there is a better chance that all my "symptoms" are nothing but benign and it's my hypochondria I need help with. I'm also just trying to come to terms with just the existence of this illness, something akin to a coming-of-age anxiety if anything...I hope that's the case and that you can talk some sense into me.
Blessings and Peace to you and your loves ones,