Mike001
Member
- Joined
- Jul 30, 2015
- Messages
- 24
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
- City
- Cardiff
Hi everyone, I tried to post on my previous link but it said that the thread was closed so this is the reason I've made a new one. I hope everyone is still alright and keeping well.
Right, unfortunately I've had to turn to the forum again for help or just to get it off my chest, as I don't speak to anyone about what's going on because it will only cause upset. I've still got the persistent twitching, mostly still the small barely noticable ones in my calves and feet arches. I get the random ones around my body but hardly at all. I have jerking in my right arm and a sort of contraction feeling. I've had this one twitch in the right side of my upper lip now (which I forgot to mention) for over 3 months now! It's been intermittent (twitches every 5 minutes or so throughout the whole day/night. Has anyone had this? I was told the right side of the face twitching isn't a good sign? The burning sensation in my feet and legs has been HORRIFIC in the last few weeks and now it's travelled into my chest and arms. I've also been having issues with my throat and pronunciation of my words. My mum picked up on it and I didn't realise that my speech was getting worse.
I went to my DR two weeks back and explained about my worries and also about the burning. He said that burning isn't something that happens in ALS. He said it's not unheard of, but it's not frequent seen. He explained everything I basically already know and then wanted to check me over. He asked about weakness and I said over the last 6 months my legs and arms have felt weak, I keep dropping things etc.. but I put it down to being clumsy, lack of sleep or just not keeping fit. I told him my EMG was clean but it was only a week or two after the twitching. He started looking at my muscles and asking me to do different things and he noticed on my right Bicep a sink/dent/dip in the muscle, looks like muscle has melted away, which I haven't got on the other side. Then on further examination he checked over my legs and on the same side (the right) he found a dip in my calf (where the twitching first started) that I didn't have on my left calf. I also have a tiny flutter twitch in my right hand to, the meaty bit by my thumb and now I can see it's a LOT smaller than the left one. He's put me on urgent to see my neuro and wrote her a letter to get me seen as soon as possible. I'm due to see the neuro on the 3rd of November anyway.
I had my blood results back (think it was my LDH) it was 233. I was told its abnormal level and too high. Apparently it indicates tissue/muscle damage? I think it's a CK or something like that he wants done next. I didn't really take notice of the weakness as I'm a thin build and I put it down to that among other things and the atrophy I didn't see until he spotted it and now everything's just dawned on me. I'm just a state. I've lost my job, my girlfriend is upset seeing the state I'm in and I have barely left my bedroom the last two weeks. Everything's gone down hill in the last 18 months, I just want to put a name to what's going on. I know it's no good, I know I need to take it on the chin and I know if it does turn out to be ALS then there's nothing I can do in my power other than deal with it. I don't expect anyone to be sympathetic, I'm just scared of what's to come.
All bloods have ruled out Lymes, Vitamin/Mineral deficiency, Hyperglycaemia, Thyroid. MS (brain & cervical spine) NCS - Negative.
Right, unfortunately I've had to turn to the forum again for help or just to get it off my chest, as I don't speak to anyone about what's going on because it will only cause upset. I've still got the persistent twitching, mostly still the small barely noticable ones in my calves and feet arches. I get the random ones around my body but hardly at all. I have jerking in my right arm and a sort of contraction feeling. I've had this one twitch in the right side of my upper lip now (which I forgot to mention) for over 3 months now! It's been intermittent (twitches every 5 minutes or so throughout the whole day/night. Has anyone had this? I was told the right side of the face twitching isn't a good sign? The burning sensation in my feet and legs has been HORRIFIC in the last few weeks and now it's travelled into my chest and arms. I've also been having issues with my throat and pronunciation of my words. My mum picked up on it and I didn't realise that my speech was getting worse.
I went to my DR two weeks back and explained about my worries and also about the burning. He said that burning isn't something that happens in ALS. He said it's not unheard of, but it's not frequent seen. He explained everything I basically already know and then wanted to check me over. He asked about weakness and I said over the last 6 months my legs and arms have felt weak, I keep dropping things etc.. but I put it down to being clumsy, lack of sleep or just not keeping fit. I told him my EMG was clean but it was only a week or two after the twitching. He started looking at my muscles and asking me to do different things and he noticed on my right Bicep a sink/dent/dip in the muscle, looks like muscle has melted away, which I haven't got on the other side. Then on further examination he checked over my legs and on the same side (the right) he found a dip in my calf (where the twitching first started) that I didn't have on my left calf. I also have a tiny flutter twitch in my right hand to, the meaty bit by my thumb and now I can see it's a LOT smaller than the left one. He's put me on urgent to see my neuro and wrote her a letter to get me seen as soon as possible. I'm due to see the neuro on the 3rd of November anyway.
I had my blood results back (think it was my LDH) it was 233. I was told its abnormal level and too high. Apparently it indicates tissue/muscle damage? I think it's a CK or something like that he wants done next. I didn't really take notice of the weakness as I'm a thin build and I put it down to that among other things and the atrophy I didn't see until he spotted it and now everything's just dawned on me. I'm just a state. I've lost my job, my girlfriend is upset seeing the state I'm in and I have barely left my bedroom the last two weeks. Everything's gone down hill in the last 18 months, I just want to put a name to what's going on. I know it's no good, I know I need to take it on the chin and I know if it does turn out to be ALS then there's nothing I can do in my power other than deal with it. I don't expect anyone to be sympathetic, I'm just scared of what's to come.
All bloods have ruled out Lymes, Vitamin/Mineral deficiency, Hyperglycaemia, Thyroid. MS (brain & cervical spine) NCS - Negative.