Jay654
Member
- Joined
- Mar 23, 2017
- Messages
- 19
- Reason
- Lost a loved one
- Country
- UK
- State
- London
- City
- London
Hi All,
My names Jay, I am from the UK I am quite young & healthy, early 30s (which makes alot of people dismiss the possibility of ALS). My problems started at Xmas time 2016 although I believe this has been going on longer than this now I think back. I have read quite a bit on the forum & the kindness and warmth of the community made me decide to post. I would like members opinions if possible. Apologies for how long it is but I didn't want to miss anything out.
The first thing I noticed was weakness in my right dominant leg, it was shaking when I would raise my leg to straighten it, having been a keen footballer (soccer player) and playing up to 5 times a week (and before all this I did have a powerful right foot) I knew something wasn't quite right but I put it down to the fact I had a couple of weeks off. So I trained hard in the gym to try correct it, this seemed to be working but then all of a sudden it stopped working, infact my leg would feel stiff and quite strange and it prevented me from playing.
Then I noticed the twitching, a very fine twitching on the right outer quadricep/thigh, it was almost hard to see but it wasnt something I had seen before and would only happen when I tried to straighten the leg. I saw my GP and he said to rest for a month and see what happens, I did this and of course the symptoms got worse in fact my whole side of my outer thigh now twitches when standing and if I try to run or walk it feels strange as though a rubbing feeling but no pain it feels as though it isn't working naturally, I kind of have to think about walking and how I stand. The last time I attempted to run I tripped up a few times but convinced myself to blame it on uneven ground and having not ran in a while. The leg can occasionally ache but this isn't something thats happening very often. It looks like the muscle is wasting and there are strange grooves and dents developing in the leg. At night time or when it was straightened it felt as though the whole leg was vibrating this made it difficult to sleep.
This has since got less annoying but unfortunately has spread to my right arm aswell, which seems to have a tremor almost all the time especially when out stretched or raised. And the weakness in it is quite worrying alot more so than the leg. At first I thought it was an old injury but things that were easy to me are now becoming very difficult. Lifting my son, holding a saucepan, kettle, even driving it doesn't feel right and seems to tire so quickly. I had a very close relative pass away with the same disease and she came to me with her earliest symptoms hoping I could shed some light on it with my sports background but I could only say trapped nerve at the time and apart from hers starting in the calf, it feels like dejavu.
I constantly feel tired and no matter how much sleep I have, the symptoms do not get any better.
At night time I also feel slight twitching in the exact same spot (right leg) aswell as different areas of the legs and there is a tremor in my back/spine aswell as my right arm (which is probably the worst part). This is consistent every time I go to bed. I wake up alot with numb fingers (outer fingers of the right hand) Also there appears to be atophy in the right tricep which I have only recently noticed. This explains the struggle of simple tasks I had been finding easy before. The left arm is alot bigger than the right and I am right handed. No muscle has completely stopped working yet or died but I feel they are not far off, especially the right arm. I understand time is more of an indicator but I'd rather know now if it is, so I can enjoy my life before I become debiliatated if I am heading down that path.
I have since seen a neurologist who checked my reflexes of the legs they were brisk. He then did an EMG test and NCS, MRI and blood tests. The legs were showing fast speeds in the NCS more so in the right leg and the right arm was very slow (the problematic one). He couldn't find any fasciculations as of yet but I don't have them that often more so at night or after I use the muscle sometimes. Its more of the fine twitching I have when using the muscle. The right leg seemed to show a fibrillation but he told me to relax and I turned my leg and it seemed to go? (possibly the needle moved). He never checked the right tricep only the shoulder. The blood tests were all fine and the MRI was clear as he put it. Since the tests my left leg has began to show signs of the same on the outer side but it seems to be aching alot more, something I've not really had with the right leg as much & as my symptoms have progressed he has decided to put me in touch with an expert in ALS, who actually is a firm believer that people get diagnosed too late with ALS and this causes problems for care and also limited time use of any medication that can slow it down.
I appreciate anyone who takes the time to read my post or comment & having been a person who has lost someone close to ALS I know all too well how awful this disease is. I guess I am hoping someone has had similar symptoms and it turned out to be something else, if not I will be becoming a permanent contributor on here.
Thanks again, Jay
My names Jay, I am from the UK I am quite young & healthy, early 30s (which makes alot of people dismiss the possibility of ALS). My problems started at Xmas time 2016 although I believe this has been going on longer than this now I think back. I have read quite a bit on the forum & the kindness and warmth of the community made me decide to post. I would like members opinions if possible. Apologies for how long it is but I didn't want to miss anything out.
The first thing I noticed was weakness in my right dominant leg, it was shaking when I would raise my leg to straighten it, having been a keen footballer (soccer player) and playing up to 5 times a week (and before all this I did have a powerful right foot) I knew something wasn't quite right but I put it down to the fact I had a couple of weeks off. So I trained hard in the gym to try correct it, this seemed to be working but then all of a sudden it stopped working, infact my leg would feel stiff and quite strange and it prevented me from playing.
Then I noticed the twitching, a very fine twitching on the right outer quadricep/thigh, it was almost hard to see but it wasnt something I had seen before and would only happen when I tried to straighten the leg. I saw my GP and he said to rest for a month and see what happens, I did this and of course the symptoms got worse in fact my whole side of my outer thigh now twitches when standing and if I try to run or walk it feels strange as though a rubbing feeling but no pain it feels as though it isn't working naturally, I kind of have to think about walking and how I stand. The last time I attempted to run I tripped up a few times but convinced myself to blame it on uneven ground and having not ran in a while. The leg can occasionally ache but this isn't something thats happening very often. It looks like the muscle is wasting and there are strange grooves and dents developing in the leg. At night time or when it was straightened it felt as though the whole leg was vibrating this made it difficult to sleep.
This has since got less annoying but unfortunately has spread to my right arm aswell, which seems to have a tremor almost all the time especially when out stretched or raised. And the weakness in it is quite worrying alot more so than the leg. At first I thought it was an old injury but things that were easy to me are now becoming very difficult. Lifting my son, holding a saucepan, kettle, even driving it doesn't feel right and seems to tire so quickly. I had a very close relative pass away with the same disease and she came to me with her earliest symptoms hoping I could shed some light on it with my sports background but I could only say trapped nerve at the time and apart from hers starting in the calf, it feels like dejavu.
I constantly feel tired and no matter how much sleep I have, the symptoms do not get any better.
At night time I also feel slight twitching in the exact same spot (right leg) aswell as different areas of the legs and there is a tremor in my back/spine aswell as my right arm (which is probably the worst part). This is consistent every time I go to bed. I wake up alot with numb fingers (outer fingers of the right hand) Also there appears to be atophy in the right tricep which I have only recently noticed. This explains the struggle of simple tasks I had been finding easy before. The left arm is alot bigger than the right and I am right handed. No muscle has completely stopped working yet or died but I feel they are not far off, especially the right arm. I understand time is more of an indicator but I'd rather know now if it is, so I can enjoy my life before I become debiliatated if I am heading down that path.
I have since seen a neurologist who checked my reflexes of the legs they were brisk. He then did an EMG test and NCS, MRI and blood tests. The legs were showing fast speeds in the NCS more so in the right leg and the right arm was very slow (the problematic one). He couldn't find any fasciculations as of yet but I don't have them that often more so at night or after I use the muscle sometimes. Its more of the fine twitching I have when using the muscle. The right leg seemed to show a fibrillation but he told me to relax and I turned my leg and it seemed to go? (possibly the needle moved). He never checked the right tricep only the shoulder. The blood tests were all fine and the MRI was clear as he put it. Since the tests my left leg has began to show signs of the same on the outer side but it seems to be aching alot more, something I've not really had with the right leg as much & as my symptoms have progressed he has decided to put me in touch with an expert in ALS, who actually is a firm believer that people get diagnosed too late with ALS and this causes problems for care and also limited time use of any medication that can slow it down.
I appreciate anyone who takes the time to read my post or comment & having been a person who has lost someone close to ALS I know all too well how awful this disease is. I guess I am hoping someone has had similar symptoms and it turned out to be something else, if not I will be becoming a permanent contributor on here.
Thanks again, Jay