Ecokid
New member
- Joined
- Sep 23, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hello,
I've read the sticky and am grateful for the posters on this site for any input. I'm 37 and my symptoms began in January 2020. The first thing i started to noticed was a numbness of both feet (i could feel sensation but it felt slightly tingling all over). I assumed it was a pinched nerve or some sort of stress and left it. After a month it hadn't gone away so i got my bloods done which were normal. As it was mid pandemic and everything was crazy, i just got on with life and put it aside. My partner is also a GP and he wasn't worried about it. So i wasn't either.
In the end April 2021 over the space of 48 hours i had twitching begin in my left toes which spread rapidly across my body (head/trunk/legs/eyes). While in bed, I also had a plucking sensation of a nerve in my right thigh which was very uncomfortable but not painful and only lasted a few seconds. After this, I had very strong tremor/vibration throughout my legs which has persisted since. We assumed it might be MS and got an MRI sorted. It came back clean in June.
In September I started to get joint pain in my thumb and index finger as well as around my hamstring and my tendons in my feet and hands are both much more visible than before. After the clean MRI i started to look into what else it could be but didn't seriously consider ALS until August as my onset symptoms were not typical whatsoever. I have not lost any function yet, but I am starting to struggle with walking. My left hamstring is becoming painful to walk on and I am starting to struggle walking any distance. I still have to wait a month until i see a neurologist - the wait times here have been over 2 months for a private appointment due to the backlog caused by covid.
I keep trying to reassure myself that it cant be ALS but i stumbled upon some concerning research yesterday. My mother had Schizophrenia and my sister has epilepsy (which has an 10% increased prevalance in children of patients with schizophrenia, which suggests there is potentially a dodgy group of genes in my family). In 2017, researchers at Trinity College Dublin published research which suggests an increased incidence of FALS/MND in families with a history of Schizophrenia or even a higher prevalance of suicide.
I'm at a loss and feel so sad all the time. I don't know how to get through the next month. I hope its going to be ok.
I've read the sticky and am grateful for the posters on this site for any input. I'm 37 and my symptoms began in January 2020. The first thing i started to noticed was a numbness of both feet (i could feel sensation but it felt slightly tingling all over). I assumed it was a pinched nerve or some sort of stress and left it. After a month it hadn't gone away so i got my bloods done which were normal. As it was mid pandemic and everything was crazy, i just got on with life and put it aside. My partner is also a GP and he wasn't worried about it. So i wasn't either.
In the end April 2021 over the space of 48 hours i had twitching begin in my left toes which spread rapidly across my body (head/trunk/legs/eyes). While in bed, I also had a plucking sensation of a nerve in my right thigh which was very uncomfortable but not painful and only lasted a few seconds. After this, I had very strong tremor/vibration throughout my legs which has persisted since. We assumed it might be MS and got an MRI sorted. It came back clean in June.
In September I started to get joint pain in my thumb and index finger as well as around my hamstring and my tendons in my feet and hands are both much more visible than before. After the clean MRI i started to look into what else it could be but didn't seriously consider ALS until August as my onset symptoms were not typical whatsoever. I have not lost any function yet, but I am starting to struggle with walking. My left hamstring is becoming painful to walk on and I am starting to struggle walking any distance. I still have to wait a month until i see a neurologist - the wait times here have been over 2 months for a private appointment due to the backlog caused by covid.
I keep trying to reassure myself that it cant be ALS but i stumbled upon some concerning research yesterday. My mother had Schizophrenia and my sister has epilepsy (which has an 10% increased prevalance in children of patients with schizophrenia, which suggests there is potentially a dodgy group of genes in my family). In 2017, researchers at Trinity College Dublin published research which suggests an increased incidence of FALS/MND in families with a history of Schizophrenia or even a higher prevalance of suicide.
I'm at a loss and feel so sad all the time. I don't know how to get through the next month. I hope its going to be ok.