jjhillier
New member
- Joined
- Mar 5, 2023
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- OH
- City
- brookfield
hello, i am looking for answers for if this could be ALS for a loved one.
Disclaimer: i am not trying offend anyone in anyway i am really just looking for answers from people have lived with this first hand rather than articles that are misleading/ not actually experienced.
my boyfriend, 26 has had symptoms that he has been dealing with for over a year now. it started with spasms/twitches/numbness in arms and hands and over a few months began all over his body including face . i see the twitching bad in his fingers and stomach.
during this time he also started experiencing soreness everywhere, tongue twitches that come and go, headaches, weak/shaky arms hands and legs. trouble swallowing/chewing, drooling, clumsiness, dropping things. more recently he said he gets tired hands and arms doing things like brushing his teeth, writing and typing. he went from over a year ago playing basketball multiple times a week to now he gets fatigued walking after ten minutes and needs a break. he also experiences shortness of break and he often says he feels like he can’t breathe.
he says he believes he has astrophy in his one hand but i am unsure because i never payed that much attention to what it looked like before. he says his arms and legs are skinnier and that he’s lost a lot of muscle.
he has trouble with going to the bathroom such as leaking urine
these symptoms have all also affected him sexually
he has been to neurological specialists a few times at cleveland clinic. they usually follow up with him every few months. they said his physical exams are always good and normal except his reflexes are a little high.
he has had EMG’s a few times and other tests which i believe had all been good. they have considered cramp-fasciculation syndrome and have tried a few different medications but none seem to make a difference. they have said they don’t believe this is ALS but can’t completely rule it out which has him in complete panic. they seem to say it’s more of that they have to see how it progresses over time. all of his symptoms seem to progress.
he also feels foggy almost all of the time and also has a sore jaw and says talking a lot makes him tired
i’m sure i am missing other symptoms he has expressed
i appreciate any replies or responses and again i am not trying to offend anyone if i somehow do, just looking for opinions from people first hand. he is bad with googling everything and the answers being extreme. he is just completely miserable and emotional about this every day for almost a year now.
thank you for taking time to read and respond
Disclaimer: i am not trying offend anyone in anyway i am really just looking for answers from people have lived with this first hand rather than articles that are misleading/ not actually experienced.
my boyfriend, 26 has had symptoms that he has been dealing with for over a year now. it started with spasms/twitches/numbness in arms and hands and over a few months began all over his body including face . i see the twitching bad in his fingers and stomach.
during this time he also started experiencing soreness everywhere, tongue twitches that come and go, headaches, weak/shaky arms hands and legs. trouble swallowing/chewing, drooling, clumsiness, dropping things. more recently he said he gets tired hands and arms doing things like brushing his teeth, writing and typing. he went from over a year ago playing basketball multiple times a week to now he gets fatigued walking after ten minutes and needs a break. he also experiences shortness of break and he often says he feels like he can’t breathe.
he says he believes he has astrophy in his one hand but i am unsure because i never payed that much attention to what it looked like before. he says his arms and legs are skinnier and that he’s lost a lot of muscle.
he has trouble with going to the bathroom such as leaking urine
these symptoms have all also affected him sexually
he has been to neurological specialists a few times at cleveland clinic. they usually follow up with him every few months. they said his physical exams are always good and normal except his reflexes are a little high.
he has had EMG’s a few times and other tests which i believe had all been good. they have considered cramp-fasciculation syndrome and have tried a few different medications but none seem to make a difference. they have said they don’t believe this is ALS but can’t completely rule it out which has him in complete panic. they seem to say it’s more of that they have to see how it progresses over time. all of his symptoms seem to progress.
he also feels foggy almost all of the time and also has a sore jaw and says talking a lot makes him tired
i’m sure i am missing other symptoms he has expressed
i appreciate any replies or responses and again i am not trying to offend anyone if i somehow do, just looking for opinions from people first hand. he is bad with googling everything and the answers being extreme. he is just completely miserable and emotional about this every day for almost a year now.
thank you for taking time to read and respond