SW2022
New member
- Joined
- Jan 22, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hey ALS forum,
I'm looking forward to meeting you guys.
I'm 33, and have had a load of strange symptoms over the past 2 years that I mainly brushed off.
Of course I mostly want you guys to say 'oh no way that's not ALS' and I'd appreciate your opinions.
My symptoms are:
Fasciculations, constantly, all over my body (incl. tongue) that started in one leg about 1 month ago.
My foot stopped working while I was driving and I couldn't push the pedal even though it felt fine. But this hasn't happened again...?
Random muscles keep tensing up by themselves for a few hours, especially in my forearms, legs and buttocks. I had a few weeks where a muscle at the base of my thumb was tensed up so much it really did hurt. Sometimes its uncomfortable, most of the time I don't notice until I try to use the muscle.
My left arm shakes if I pick up something like a jug of water but my right is fine.
My symptoms I don't connect to ALS but you guys might be able to help:
Pain in my legs (perhaps cramping? But constant pain for a few hours) and forearms.
Feeling my bicep muscles are half clenched so it's uncomfortable to move them.
Feeling I can't move my hands as well, as if they've gotten extremely cold and they're stiff.
What seemed like radiculopathy (numb finger and thumb) has been on and off for years (but this is easily explained by the narrowed nerve root passages in my cervical spine.
Tinnitus - not sure this is ALS
On and off throbbing headaches?
Dizziness - I don't think this is like ALS right?
Electric taste on tongue and like my tongue is 'fizzing'?
A couple of periods of numbness in my hip areas.
I found out I have 2 big herniated discs in my cervical spine too, and of course I'm holding onto hope it could be that, but also know it's more likely ALS according to the doctors.
I have my EMGs on Monday and Tuesday. Had MRI head already, so not MS.
The surgeons think my cervical compression isn't bad enough to cause these symptoms.
Right now, I just feel angry. I can see from my hospital notes that they suspected ALS, but didn't tell me so I spent 2 weeks panicking that nobody was bothering to treat the two herniated discs in my neck. They referred me to an ALS specialist who does EMG and I read the hyperreflexia in my notes, then it started to connect for me.
I am also mad about how long it takes to see anyone! 2m wait for EMG unless I pay out of pocket. It's nightmarishly difficult and I'm just at the start.
What is making me sad (apart from the obvious) is that I have a PhD in neuroscience and spent most of my adult life learning about neurodegenerative diseases, just not ALS. Now if I have ALS I can't even work on it because I'll progress too fast to make any meaningful progress! Working on things like this makes me feel better which is why I became a scientist in the first place.
If this is cervical compression (even though the chance is slim) I will be working on ALS. What a rubbish, terrifying disease! The only thing that's good about it is that you keep your mind. It made me feel better that people can still write books even while they live with ALS.
For now, I'm setting myself up by finding support and getting real with it. Last week was not fun and I think I'm in 'bargaining/denial/periodic grief' right now.
I'm looking forward to meeting you guys.
I'm 33, and have had a load of strange symptoms over the past 2 years that I mainly brushed off.
Of course I mostly want you guys to say 'oh no way that's not ALS' and I'd appreciate your opinions.
My symptoms are:
Fasciculations, constantly, all over my body (incl. tongue) that started in one leg about 1 month ago.
My foot stopped working while I was driving and I couldn't push the pedal even though it felt fine. But this hasn't happened again...?
Random muscles keep tensing up by themselves for a few hours, especially in my forearms, legs and buttocks. I had a few weeks where a muscle at the base of my thumb was tensed up so much it really did hurt. Sometimes its uncomfortable, most of the time I don't notice until I try to use the muscle.
My left arm shakes if I pick up something like a jug of water but my right is fine.
My symptoms I don't connect to ALS but you guys might be able to help:
Pain in my legs (perhaps cramping? But constant pain for a few hours) and forearms.
Feeling my bicep muscles are half clenched so it's uncomfortable to move them.
Feeling I can't move my hands as well, as if they've gotten extremely cold and they're stiff.
What seemed like radiculopathy (numb finger and thumb) has been on and off for years (but this is easily explained by the narrowed nerve root passages in my cervical spine.
Tinnitus - not sure this is ALS
On and off throbbing headaches?
Dizziness - I don't think this is like ALS right?
Electric taste on tongue and like my tongue is 'fizzing'?
A couple of periods of numbness in my hip areas.
I found out I have 2 big herniated discs in my cervical spine too, and of course I'm holding onto hope it could be that, but also know it's more likely ALS according to the doctors.
I have my EMGs on Monday and Tuesday. Had MRI head already, so not MS.
The surgeons think my cervical compression isn't bad enough to cause these symptoms.
Right now, I just feel angry. I can see from my hospital notes that they suspected ALS, but didn't tell me so I spent 2 weeks panicking that nobody was bothering to treat the two herniated discs in my neck. They referred me to an ALS specialist who does EMG and I read the hyperreflexia in my notes, then it started to connect for me.
I am also mad about how long it takes to see anyone! 2m wait for EMG unless I pay out of pocket. It's nightmarishly difficult and I'm just at the start.
What is making me sad (apart from the obvious) is that I have a PhD in neuroscience and spent most of my adult life learning about neurodegenerative diseases, just not ALS. Now if I have ALS I can't even work on it because I'll progress too fast to make any meaningful progress! Working on things like this makes me feel better which is why I became a scientist in the first place.
If this is cervical compression (even though the chance is slim) I will be working on ALS. What a rubbish, terrifying disease! The only thing that's good about it is that you keep your mind. It made me feel better that people can still write books even while they live with ALS.
For now, I'm setting myself up by finding support and getting real with it. Last week was not fun and I think I'm in 'bargaining/denial/periodic grief' right now.
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