VWPGSY
Member
- Joined
- Oct 19, 2014
- Messages
- 25
- Reason
- Lost a loved one
- Country
- UK
- State
- Avon
- City
- Bristol
Hi everyone
My Dad passed away in August 2014 from MND/ALS - 2 days prior to my wedding.
Since then, aside from the sadness and grief of missing my beloved father, I have TOTALLY consumed by fear that I was experiencing ALS symptoms - weakness, twitching, buzzing, slurring muscle stiffness, atrophy - every part of my body, sometimes very localised, sometimes not.
My "symptoms" were very real, they were not imaginary. They were constant. When I woke up, all day long, and when I went to sleep.
After almost a year, several different neuro visits, an EMG etc, I have begun to realise that I do not have ALS (touchwood!). I have been told too many times, by people on forums (such as this one) and by doctors that it is very unlikely I have anything other than anxiety and simple twitching (benign).
Many people twitch, buzz, have weakness etc, but very often (practically most of the time) it's not ALS. My chances of getting it are only marginally higher than someone without a parent who had it - i.e. it's a rare illness.
I can only begin to describe the stress it's put me through, and all for nothing.
Life is so short and precious, if you've been told you have nothing to worry about, then please don't consume yourselves with the illness. I know it's hard not to think about it all the time, but you should try very hard not to.
I still buzz and twitch now and may have another neuro check up in the future, but I cannot justify worrying all the time any more and implore others who felt like me to do the same - try and enjoy each and every day - a technique called "mindfulness" helped me a lot and staying off Dr. Google has helped a lot.
Simply ignoring your worries and symptoms is hard at first, but after a while, it becomes easy.
For those that have the illness, spend a thought for them, pray for them, but do not consume yourself with anxiety from perceived "symptoms" you have, that 99% of the time, are not ALS.
Good luck to those who are worried and if I can help you, please feel free to direct message you. I am in the UK by the way.
My Dad passed away in August 2014 from MND/ALS - 2 days prior to my wedding.
Since then, aside from the sadness and grief of missing my beloved father, I have TOTALLY consumed by fear that I was experiencing ALS symptoms - weakness, twitching, buzzing, slurring muscle stiffness, atrophy - every part of my body, sometimes very localised, sometimes not.
My "symptoms" were very real, they were not imaginary. They were constant. When I woke up, all day long, and when I went to sleep.
After almost a year, several different neuro visits, an EMG etc, I have begun to realise that I do not have ALS (touchwood!). I have been told too many times, by people on forums (such as this one) and by doctors that it is very unlikely I have anything other than anxiety and simple twitching (benign).
Many people twitch, buzz, have weakness etc, but very often (practically most of the time) it's not ALS. My chances of getting it are only marginally higher than someone without a parent who had it - i.e. it's a rare illness.
I can only begin to describe the stress it's put me through, and all for nothing.
Life is so short and precious, if you've been told you have nothing to worry about, then please don't consume yourselves with the illness. I know it's hard not to think about it all the time, but you should try very hard not to.
I still buzz and twitch now and may have another neuro check up in the future, but I cannot justify worrying all the time any more and implore others who felt like me to do the same - try and enjoy each and every day - a technique called "mindfulness" helped me a lot and staying off Dr. Google has helped a lot.
Simply ignoring your worries and symptoms is hard at first, but after a while, it becomes easy.
For those that have the illness, spend a thought for them, pray for them, but do not consume yourself with anxiety from perceived "symptoms" you have, that 99% of the time, are not ALS.
Good luck to those who are worried and if I can help you, please feel free to direct message you. I am in the UK by the way.