Lou02
New member
- Joined
- Feb 14, 2022
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hello to all the lovely people on this forum.
I always said I would be back one diagnosed or better, so here I am. (prev thread here)
Nearly two years on from initial symptoms, I am alot better though my symptoms are still here but alot less intense.
I now spend my time working out what makes me feel better rather than searching for a diagnosis.
I found getting a good night's sleep helps.
As did quitting caffeine.
And a low does antidepressant to get me through the tough times.
The last time I posted I just had a clean EMG, since the I saw the neurologist once more and he has signed me off his case for now.
The neurologist did say my jaw symptoms could be dystonia but whilst it is intermittent and at that time getting better he wouldn't treat it anyway.
Now I could go down a rabbit hole of searching the internet with regards to dystonia. But to be honest I'm tired of searching and feel grateful for the health I have as I know there are so many people suffering with much worse situations that mine.
Also I am hopeful I could recover fully one day as I have made such improvements so far
Thankyou to all those that supported me.
Sorry to those who have messaged me but I can't figure out how to reply.
To all those worrying that they could have and have been told by this forum it's unlikely - have patience with your body and figure out what makes you feel better instead of what it is making you feel bad. (Easier said than done I know)
Love to all
I always said I would be back one diagnosed or better, so here I am. (prev thread here)
Nearly two years on from initial symptoms, I am alot better though my symptoms are still here but alot less intense.
I now spend my time working out what makes me feel better rather than searching for a diagnosis.
I found getting a good night's sleep helps.
As did quitting caffeine.
And a low does antidepressant to get me through the tough times.
The last time I posted I just had a clean EMG, since the I saw the neurologist once more and he has signed me off his case for now.
The neurologist did say my jaw symptoms could be dystonia but whilst it is intermittent and at that time getting better he wouldn't treat it anyway.
Now I could go down a rabbit hole of searching the internet with regards to dystonia. But to be honest I'm tired of searching and feel grateful for the health I have as I know there are so many people suffering with much worse situations that mine.
Also I am hopeful I could recover fully one day as I have made such improvements so far
Thankyou to all those that supported me.
Sorry to those who have messaged me but I can't figure out how to reply.
To all those worrying that they could have and have been told by this forum it's unlikely - have patience with your body and figure out what makes you feel better instead of what it is making you feel bad. (Easier said than done I know)
Love to all
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