jaffajeo
New member
- Joined
- Dec 26, 2019
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- NY
- City
- Edinburgh
Hello everybody ,
Firstly, I'm really grateful for this community being so kind and generous as to include those who are not technically affected by ALS. I appreciate the straight forward feedback and advice of folks with experience of the condition that all of us posting here, are so afraid of.
For about 14 months, I've experienced twitches which began in my thighs, but very quickly (almost instantly) began to affect every part of my body. Legs... Arms... Waist... Head, eyes you name it. My twitches are most often singular - 3 times, sometimes when I'm in bed they can bop-bop-bop to about 10 before I move the affected limb which makes it stop. They resemble a pulse / where they seem to pop out (rather than for example, ripple).
For the last 2 - 3 weeks, I've felt it mostly on my left foot (under the ankle, to the side of my foot / arch area.)
In general they are worse when I'm sat down, and worst when I'm in bed at night. Some twitches can be a little sore, especially in the foot arch area, where it feels like they almost pop and twist!
Also, I feel vibrations like buzzing, for example, if I sleep with my head over my arm, I might feel as if my arm muscle is very slightly vibrating.
I get more pins and needles as I did, well in my feet and hands, and sometimes (much more rarely) on the side of my face. The P&N on my face is not 'completely' numb, just distinctly less sensitive (it recovers after 15 - 30mins.) The pins and needles in my hands / feed recover with movement / rubbing.
Since this began, (and probably month before it) I also experience dull aches, and sometimes stabbing pains in my finger tips / toes. Alternating. They've never got worse (and on the contrary come and go, but generally improve depending on how I feel / what I eat.)
I've experienced what I could describe as perceived weakness, for example my arms or legs might just feel weak. I say perceived, because... if I'm late for a bus I overcome that sensation to run, and likewise if I have to for example, move furniture.
So, 14 months I've lived with the twitches daily and I'd appreciate any feedback. I'm 17 stone guy, 5'11, slightly sedentary (working behind computer). I don't think I've got any signs of atrophy, and I certainly haven't become physically impaired.
As I can't really afford to see neurologists or get EMG's etc - I'd certainly appreciate any feedback. I know we're not doctors but I'd appreciate any advice.
PS - I do suffer from health anxiety (possibly a result of minor OCD) and this is the killer... I believe my own anxieties about my symptoms even made my partner so anxious that she began to experience similar symptoms (and has done for the last 5 month) again with no atrophy / physical weakness whatsoever. It makes me feel terrible to think I've probably brought about these symptoms in a loved one.
Anyway - appreciate the great work you guys are doing and I'd love to hear your thoughts, and thanks for letting me become a part of the community.
Firstly, I'm really grateful for this community being so kind and generous as to include those who are not technically affected by ALS. I appreciate the straight forward feedback and advice of folks with experience of the condition that all of us posting here, are so afraid of.
For about 14 months, I've experienced twitches which began in my thighs, but very quickly (almost instantly) began to affect every part of my body. Legs... Arms... Waist... Head, eyes you name it. My twitches are most often singular - 3 times, sometimes when I'm in bed they can bop-bop-bop to about 10 before I move the affected limb which makes it stop. They resemble a pulse / where they seem to pop out (rather than for example, ripple).
For the last 2 - 3 weeks, I've felt it mostly on my left foot (under the ankle, to the side of my foot / arch area.)
In general they are worse when I'm sat down, and worst when I'm in bed at night. Some twitches can be a little sore, especially in the foot arch area, where it feels like they almost pop and twist!
Also, I feel vibrations like buzzing, for example, if I sleep with my head over my arm, I might feel as if my arm muscle is very slightly vibrating.
I get more pins and needles as I did, well in my feet and hands, and sometimes (much more rarely) on the side of my face. The P&N on my face is not 'completely' numb, just distinctly less sensitive (it recovers after 15 - 30mins.) The pins and needles in my hands / feed recover with movement / rubbing.
Since this began, (and probably month before it) I also experience dull aches, and sometimes stabbing pains in my finger tips / toes. Alternating. They've never got worse (and on the contrary come and go, but generally improve depending on how I feel / what I eat.)
I've experienced what I could describe as perceived weakness, for example my arms or legs might just feel weak. I say perceived, because... if I'm late for a bus I overcome that sensation to run, and likewise if I have to for example, move furniture.
So, 14 months I've lived with the twitches daily and I'd appreciate any feedback. I'm 17 stone guy, 5'11, slightly sedentary (working behind computer). I don't think I've got any signs of atrophy, and I certainly haven't become physically impaired.
As I can't really afford to see neurologists or get EMG's etc - I'd certainly appreciate any feedback. I know we're not doctors but I'd appreciate any advice.
PS - I do suffer from health anxiety (possibly a result of minor OCD) and this is the killer... I believe my own anxieties about my symptoms even made my partner so anxious that she began to experience similar symptoms (and has done for the last 5 month) again with no atrophy / physical weakness whatsoever. It makes me feel terrible to think I've probably brought about these symptoms in a loved one.
Anyway - appreciate the great work you guys are doing and I'd love to hear your thoughts, and thanks for letting me become a part of the community.