looking for answers for a loved one

Status
Not open for further replies.

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
 
Hi there-

So sorry this has been such a worry to you both. We do ask that people have a read here first, as it lays out a variety of things to do with ALS and addresses such things as twitching and why sensory issues point away from ALS. I am not dismissing symptoms, only that what you are relaying doesn't sound like ALS.

Your boyfriend has been under the care of specialists who are tracking symptoms and have given EMG tests and they don't see ALS. You list a few things that indicate something else is going on as well. It sounds like a very complicated issue, so any questions would have to be directed back to the neurologists. It's completely understandable he would want answers, but unfortunately we can't provide them here, except to say it really doesn't sound like ALS.

Take care
 
thank you for the reply! i’m not looking for answers i guess just reassurance and opinions. it has been very hard as he cries almost every day because he is so uncomfortable and feels terrible but can’t find any solutions
 
I hope he is getting counseling. Being undiagnosed is very difficult and saying this does not mean I think it is all in his head. support from a professional can really help.

As Fiona says answers need to come from the doctors but it doesn’t sound typical of ALS
 
Did they do an MRI (brain) to rule out MS and blood tests to rule out other autoimmune diseases? Maybe it's time for him to see a rheumatologist, especially with the pain.

I'm sorry he's going through all that at such a young age.
 
yes he’s had many MRI’s on head/ brain/ neck almost everything. autoimmune diseases have been ruled out by tests. he’s seen a rheumatologist and everything came back fine that he checked.
 
Status
Not open for further replies.
Back
Top