Okay, here’s my story.
Last June I suffered some major stress when my mother had a breakdown (she’s fully recovered now thanks, it was apparently brought on by Cellulites in her leg!), but it was all very traumatic and really threw me off balance for a few weeks,
I went away for a weekend break a week later and remember tiring very easily, getting very hot and thinking I was feeling really unfit. I had been getting an annoying twitch in my left finger and thumb but as I’d had the occasion twitch around my body for as long as I can remember I didn’t take much notice until it had gone on for a few weeks and was getting very irritating, so I did what we’ve all done and Googled “twitching thumb and forefinger”. There were various references to this, and the site I read was where you could ask a Doctor a question which went a bit like “I am suffering twitching in my finger and thumb, I’m sure it can’t be ALS but it is worrying me” and the answer was “…you’d notice twitching in other parts of your body and you’d also have weakness in your hands” which did make me sweat a bit as I had been waking up in the morning and lying in bed trying to open a tube of cream and feeling really weak. Well I was curious as to what ALS was but didn’t want to look as I was worried I’d read something that would scare the crap out of me! (that was more prophetic than I knew at the time) Anyway I didn’t dwell on it and left it at that.
After a couple of weeks off to watch tennis (sorry it’s an annual tradition of mine and a darned good excuse to be totally lazy for a fortnight!) I returned to my work fixing up an upstairs bathroom for someone. I seemed to feel a bit lethargic, a bit shaky and a bit clumsy which worried me a bit as I started thinking MS. Then I noticed the twitches. I’m not sure when in the scheme of thing that I stared to notice but once my attention was drawn to them I could feel them everywhere, especially when I’d got on my haunches and stressed my calves a bit. Also I was noticing a bit of postural tremor and feeling a lack of energy.
In September I was off to Canada working for 6 weeks, and during the run up to that I had sold my new car, as I was worried I might get sick and not be able to pay the loan (so I was obviously already starting to think there was something seriously up). I thought “If it’s MS please let me have a remission until I get back from Canada and I can worry about it when I get back”. I went to Canada and had access to a computer and decided to see what causes twitching and discovered tetany and calcium deficiency. As I’m a vegetarian and my diet had recently gone a bit to pot I was relieved that I thought I’d worked it out and duly bought some calcium and vitamin D supplements.
Some days were better than others but the twitches weren’t ever far away. I’d notice that if I was stressed it was instantly worse, and last thing at night in bed they seemed to be going haywire, twitching and buzzing. I decided that on my return to the UK I’d go see my Doc and get some blood work done.
Two weeks ago today I got back to England, the twitching was quite bad but as I’d been travelling and very tired and run down I didn’t worry much until four days later when I got up in the morning feeling weak all over and thought back to the bit about ALS and felt suddenly very concerned.
I got back on the net looking for twitching, saw a reference to ALS and thought well you might as well read what it’s about. Well we’ve all been there, all the symptoms start to fit and you think Oh s**t, I’ve got this terrible disease. I spent the next few days trying to stay calm before I went to house sit for a friend last Tuesday and decided to do a bit more research. By now I was feeling terrified and didn’t sleep a wink that night. Next morning I got back on the computer and did some more reading and felt a bit more reassure when I heard about BFS on one site, but on reading another about wasting tongue, losing your voice and unable to swallow I go look in the mirror and think my tongue has shrunk I was scared to death again and went to bed thinking I was a dead man.
Next morning after another sleepless night where I shook uncontrollably with fear and sweat profusely I got out of bed feeling weak and stiff, croaking voice, twitching. Try to spend the day not getting wound up and then when I got to bed I look in the mirror, get a torch and decide that the back of my throat had wasted away. That was well and truly it I thought and shook and sweated my way through another night before returning home the next day.
After a weekend of worry and wondering if I should go around and sit everyone down and explain I was about to die of a horrible disease, yesterday I finally went to see my Doctor.
Telling him my symptoms he asks what I think it is, “Motor neurone disease (ALS) I tell him and he looks up twitching on his computer, doesn’t find anything, looks in his encyclopaedia and say’s “leg muscle fasciculation’s, lower motor neurone”. I’m surprised how calm I was, like it was the inevitability of him saying it.
Surprisingly to me he didn’t seem too interested but asked if I was stressed, which of course I was. I asked for an EMG but he said they are practically impossible to get, as they are so busy. Great I thought. Can you look at my tongue and soft palette I ask, which he duly does and I wait quietly for the result. He taps into his computer and I ask what was my tongue and throat like? “Normal” he says… then he grabs my hand and play with the muscles…tap tap on the computer…”how was my hand? I ask, normal. “extend both arms, hand out straight”…nice bit of healthy nervous hand shake there he quips. “Let me listen to your heart…galloping away nice and strongly”. You’re really stresses, take beta blockers, get a blood test, see me in three weeks”.
I get home thinking that was pretty inconclusive apart from finding out I still had a tongue and a throat and otherwise healthy but was still pretty worried and upset that an EMG was going to be impossible to get.
I take a beta blocker last night and decide to have an evening in front of the TV, chill out, no computer. When I go to bed I think bugger it, I’ve just got to read some more stuff and go the Medhelp International site where I’d been scaring myself all week and decide to systematically go through all the fasciculations post. I find one saying “get your asses over to “AboutBFS” which I duly did and OMG! I don’t believe it, there are hundreds…thousands of us! all have the same symptoms, same worries, all having innocently looked for twitching and stumbled across ALS and scared ourselves to death, totally obsessing with every little symptom. It was like a revelation. I even felt a bit stupid and a bit of a fraud, but dear god did I feel relieved!
Today I feel like I have been given a second chance, and I have my life back again. In the space of a week I’ve gone to oblivion and back. I can see now how this all snowballed, and how easy it is for it to happen. I’ve had a day where my twitching is surprisingly bad but I’m not actually panicking about it! I’ve read through posts here and seen what we’ve all put ourselves through.
I thank you for this site and for making the penny drop. I’m going to make a donation to the UK MN society, a truly horrible disease.
Last June I suffered some major stress when my mother had a breakdown (she’s fully recovered now thanks, it was apparently brought on by Cellulites in her leg!), but it was all very traumatic and really threw me off balance for a few weeks,
I went away for a weekend break a week later and remember tiring very easily, getting very hot and thinking I was feeling really unfit. I had been getting an annoying twitch in my left finger and thumb but as I’d had the occasion twitch around my body for as long as I can remember I didn’t take much notice until it had gone on for a few weeks and was getting very irritating, so I did what we’ve all done and Googled “twitching thumb and forefinger”. There were various references to this, and the site I read was where you could ask a Doctor a question which went a bit like “I am suffering twitching in my finger and thumb, I’m sure it can’t be ALS but it is worrying me” and the answer was “…you’d notice twitching in other parts of your body and you’d also have weakness in your hands” which did make me sweat a bit as I had been waking up in the morning and lying in bed trying to open a tube of cream and feeling really weak. Well I was curious as to what ALS was but didn’t want to look as I was worried I’d read something that would scare the crap out of me! (that was more prophetic than I knew at the time) Anyway I didn’t dwell on it and left it at that.
After a couple of weeks off to watch tennis (sorry it’s an annual tradition of mine and a darned good excuse to be totally lazy for a fortnight!) I returned to my work fixing up an upstairs bathroom for someone. I seemed to feel a bit lethargic, a bit shaky and a bit clumsy which worried me a bit as I started thinking MS. Then I noticed the twitches. I’m not sure when in the scheme of thing that I stared to notice but once my attention was drawn to them I could feel them everywhere, especially when I’d got on my haunches and stressed my calves a bit. Also I was noticing a bit of postural tremor and feeling a lack of energy.
In September I was off to Canada working for 6 weeks, and during the run up to that I had sold my new car, as I was worried I might get sick and not be able to pay the loan (so I was obviously already starting to think there was something seriously up). I thought “If it’s MS please let me have a remission until I get back from Canada and I can worry about it when I get back”. I went to Canada and had access to a computer and decided to see what causes twitching and discovered tetany and calcium deficiency. As I’m a vegetarian and my diet had recently gone a bit to pot I was relieved that I thought I’d worked it out and duly bought some calcium and vitamin D supplements.
Some days were better than others but the twitches weren’t ever far away. I’d notice that if I was stressed it was instantly worse, and last thing at night in bed they seemed to be going haywire, twitching and buzzing. I decided that on my return to the UK I’d go see my Doc and get some blood work done.
Two weeks ago today I got back to England, the twitching was quite bad but as I’d been travelling and very tired and run down I didn’t worry much until four days later when I got up in the morning feeling weak all over and thought back to the bit about ALS and felt suddenly very concerned.
I got back on the net looking for twitching, saw a reference to ALS and thought well you might as well read what it’s about. Well we’ve all been there, all the symptoms start to fit and you think Oh s**t, I’ve got this terrible disease. I spent the next few days trying to stay calm before I went to house sit for a friend last Tuesday and decided to do a bit more research. By now I was feeling terrified and didn’t sleep a wink that night. Next morning I got back on the computer and did some more reading and felt a bit more reassure when I heard about BFS on one site, but on reading another about wasting tongue, losing your voice and unable to swallow I go look in the mirror and think my tongue has shrunk I was scared to death again and went to bed thinking I was a dead man.
Next morning after another sleepless night where I shook uncontrollably with fear and sweat profusely I got out of bed feeling weak and stiff, croaking voice, twitching. Try to spend the day not getting wound up and then when I got to bed I look in the mirror, get a torch and decide that the back of my throat had wasted away. That was well and truly it I thought and shook and sweated my way through another night before returning home the next day.
After a weekend of worry and wondering if I should go around and sit everyone down and explain I was about to die of a horrible disease, yesterday I finally went to see my Doctor.
Telling him my symptoms he asks what I think it is, “Motor neurone disease (ALS) I tell him and he looks up twitching on his computer, doesn’t find anything, looks in his encyclopaedia and say’s “leg muscle fasciculation’s, lower motor neurone”. I’m surprised how calm I was, like it was the inevitability of him saying it.
Surprisingly to me he didn’t seem too interested but asked if I was stressed, which of course I was. I asked for an EMG but he said they are practically impossible to get, as they are so busy. Great I thought. Can you look at my tongue and soft palette I ask, which he duly does and I wait quietly for the result. He taps into his computer and I ask what was my tongue and throat like? “Normal” he says… then he grabs my hand and play with the muscles…tap tap on the computer…”how was my hand? I ask, normal. “extend both arms, hand out straight”…nice bit of healthy nervous hand shake there he quips. “Let me listen to your heart…galloping away nice and strongly”. You’re really stresses, take beta blockers, get a blood test, see me in three weeks”.
I get home thinking that was pretty inconclusive apart from finding out I still had a tongue and a throat and otherwise healthy but was still pretty worried and upset that an EMG was going to be impossible to get.
I take a beta blocker last night and decide to have an evening in front of the TV, chill out, no computer. When I go to bed I think bugger it, I’ve just got to read some more stuff and go the Medhelp International site where I’d been scaring myself all week and decide to systematically go through all the fasciculations post. I find one saying “get your asses over to “AboutBFS” which I duly did and OMG! I don’t believe it, there are hundreds…thousands of us! all have the same symptoms, same worries, all having innocently looked for twitching and stumbled across ALS and scared ourselves to death, totally obsessing with every little symptom. It was like a revelation. I even felt a bit stupid and a bit of a fraud, but dear god did I feel relieved!
Today I feel like I have been given a second chance, and I have my life back again. In the space of a week I’ve gone to oblivion and back. I can see now how this all snowballed, and how easy it is for it to happen. I’ve had a day where my twitching is surprisingly bad but I’m not actually panicking about it! I’ve read through posts here and seen what we’ve all put ourselves through.
I thank you for this site and for making the penny drop. I’m going to make a donation to the UK MN society, a truly horrible disease.
