SulleyAnneC
Member
- Joined
- May 19, 2021
- Messages
- 14
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- IT
- State
- IT
- City
- Milan
Do you know of any cases of irregular onset for ALS, beginning with generalized weakness and then developing in a specific area? Now I know this may sound like nonsense, because it
generally doesn’t happen like that.
I remember years ago, before his diagnosis, my dad started feeling really weak in all his body, a fatigue that didn’t go away with resting o sleeping or going on vacation. Went to doctor, who referred him to a neurologist, They told him he had stress. Then a few months after that his left hand stopped working and was told it was just spine problems (which he had, to be fair). He was finally diagnosed a year later but doctors refuse to admit the his initial weakness was related to ALS, that it was, rather, a coincidence. Of course having stress doesn’t exempt you from ALS, so we assumed he was just a stressed person that happened to develop the disease later on.
Now a weird thing is happening to me. I started feeling very weak last November, but blamed it on stress and burnout for a few weeks.
Took some time off work, tried yoga, relaxed, took supplements.
It’s gotten worse to the point that I can’t stand for long, my hands always shake unless they are resting on a support. I lack balance and feel like I’m always about to fall (and fell twice, blaming the rug). I wake up feeling like I can’t get out of bed, but then I do, with stiff legs and tingling everywhere in my limbs. Takes me 10 minutes to get up and sometimes my arm is numb for hours.
I have a hard time braiding my hair the way I always did because my arms can’t keep that upright position that long.
I have a cervical disc erniation but I can’t imagine it causing all this.
I had blood tests and basically every test you can image to rule out everything else.
They tell me it’s anxiety, overreacting to normal fatigue, that I “probably” have PTSD after being a caregiver for my dad for so long.
A month ago I did an EMG on my left arm that displayed fibrillation and nerve pain.
My doctor says its my cervical problem, and refuses to run other EMGs.
Another neurologist told me I’m “too young for ALS” at 34, I was shocked to be lied and gaslighted like that.
I also have painful cramps every night. I notice speech problems (my spouse noticed too and blames it on anxiety as well).
Not trying to have a diagnosis here or to disrespect pALS, but I’m just kind of worried because I see a pattern here.
Recently I talked to a patient whose first symptom was “not being able to run fast as she did and thinking she was out of shape”, and only later she started having lack of strenght in a specific area. Makes me wonder if generalized weakness might me a symptom after all.
generally doesn’t happen like that.
I remember years ago, before his diagnosis, my dad started feeling really weak in all his body, a fatigue that didn’t go away with resting o sleeping or going on vacation. Went to doctor, who referred him to a neurologist, They told him he had stress. Then a few months after that his left hand stopped working and was told it was just spine problems (which he had, to be fair). He was finally diagnosed a year later but doctors refuse to admit the his initial weakness was related to ALS, that it was, rather, a coincidence. Of course having stress doesn’t exempt you from ALS, so we assumed he was just a stressed person that happened to develop the disease later on.
Now a weird thing is happening to me. I started feeling very weak last November, but blamed it on stress and burnout for a few weeks.
Took some time off work, tried yoga, relaxed, took supplements.
It’s gotten worse to the point that I can’t stand for long, my hands always shake unless they are resting on a support. I lack balance and feel like I’m always about to fall (and fell twice, blaming the rug). I wake up feeling like I can’t get out of bed, but then I do, with stiff legs and tingling everywhere in my limbs. Takes me 10 minutes to get up and sometimes my arm is numb for hours.
I have a hard time braiding my hair the way I always did because my arms can’t keep that upright position that long.
I have a cervical disc erniation but I can’t imagine it causing all this.
I had blood tests and basically every test you can image to rule out everything else.
They tell me it’s anxiety, overreacting to normal fatigue, that I “probably” have PTSD after being a caregiver for my dad for so long.
A month ago I did an EMG on my left arm that displayed fibrillation and nerve pain.
My doctor says its my cervical problem, and refuses to run other EMGs.
Another neurologist told me I’m “too young for ALS” at 34, I was shocked to be lied and gaslighted like that.
I also have painful cramps every night. I notice speech problems (my spouse noticed too and blames it on anxiety as well).
Not trying to have a diagnosis here or to disrespect pALS, but I’m just kind of worried because I see a pattern here.
Recently I talked to a patient whose first symptom was “not being able to run fast as she did and thinking she was out of shape”, and only later she started having lack of strenght in a specific area. Makes me wonder if generalized weakness might me a symptom after all.