View Full Version : Terrified I have ALS
Hi all, I am new here and terrified I have ALS. Since Xmas I’ve had constant twitching in my lower legs, mostly my calves. It is all the time. Occasionally the odd twitch in my face or elsewhere but usually a one off or only lasting a few minutes.
My muscles ache and if I tense them they feel like they’re going to cramp. I’ve got stiffness in my groin muscles and my hamstrings are so tight it hurts to straighten my legs.
I’ve had a blood test which only showed a minor vitamin d deficiency which I’ve been taking 800 units of for two weeks. No difference.
I’m so anxious and convinced myself I have ALS, even going so far to arranging things for my wife and children for when I die. I’m finding this so difficult.
Does anyone else have these symptoms?
Google tells me I have ALS and a maximum of two years to live!!!!
Google LIES! Read this (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) to find out why.
SO MANY people have these symptoms. I have terrified myself about ALS because of twitching. And calves are one of the most common places for twitches.
I even went so far as to visit a neurologist- who said twitching in the absence of clinic weakness (this is the sort a doctor detects - not “perceived weakness”, where the patient themselves think they have noticed a body part is weaker) is completely meaningless. She said she has had at least 3 people a week in her office worrying about twitching and in her entire career NOT ONE of them has gone on to develop ALS.
Google LIES! Read this (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) to find out why.
You beat me to the punch BlueI... :)
Positive thoughts
It's the best post ever, basically, FMP.
It's the best post ever, basically, FMP.
From the best poster ever, basically, FMP. We are your fan club!! Xx
*waves a little FMP flag*
Thank you for your replies. Is it common for calf muscles to twitch 24/7 though?
I’m bloody terrified
Yes. Actually there was a poster on here a few months ago who had that very thing. And drew the same conclusions as you too (wrongly). Have you heard of BFS?
I have read about it but I can’t believe my legs are twitching for no other reason than als. I’ve read the post but even that’s hard for me as I read symptoms and I think I have them.
My arms are heavy and my leg muscles are twitching and burning now ten to the dozen and I’m panicking at some point I’m going to get the als diagnosis. It’s unbearable
I appreciate your reply but I don’t think anything is going to help me. Sorry ☹️
Do you want to recover from your anxiety disorder?
Rousey78, I could have written your original post. I have had twitching muscle also since January. Along with cramps, buzzing etc. As soon as I rest they are like popcorn all over my legs. I was referred to a neurologist by my doctor. I had an appointment last Thursday and was convinced like you that it was sinister. Saw a very experienced neurologist who did some basic exams like reflexes and standing on one foot etc and told me with no hesitation that I did not have als. He says he can spot an als patient straight away. He said I probably have bfs as twitches were all over legs and an occasional pop elsewhere. I know how you feel because as I sit here my legs are dancing but please feel reassured that you are not alone.
Rousey 78 I too am I’m the exact same position with the twitching . It’s been going on for 5 months now . It honestly seems like it’s one of the most common anxiety Symptoms and it should disappear As soon as your anxiety does. I hope you feel better soon
Rousey78, I could have written your original post. I have had twitching muscle also since January. Along with cramps, buzzing etc. As soon as I rest they are like popcorn all over my legs. I was referred to a neurologist by my doctor. I had an appointment last Thursday and was convinced like you that it was sinister. Saw a very experienced neurologist who did some basic exams like reflexes and standing on one foot etc and told me with no hesitation that I did not have als. He says he can spot an als patient straight away. He said I probably have bfs as twitches were all over legs and an occasional pop elsewhere. I know how you feel because as I sit here my legs are dancing but please feel reassured that you are not alone.
Hi Ajack I am so relieved to read your post ! And so glad everything went well . I too have been twitching since January and it’s driving me crazy your comments about what your neurologist said has comforted me as I still do all this stuff like stand on one leg lol to make sure I can . My twitches too are all over . I hope they go away soon .
ALS is a particularly long dark rabbit hole. Have you had worries about your health before?
Murphy93
It has been a rough few months, most days I am rational and can see how long I have been twitching, it's not getting any worse, no other symptoms and I can convince myself that it's just something I need to get through. However I have had days of worry and have convinced myself it's sinister.
The neurologist I saw didn't even suggest an emg and as soon as I said that I had been having twitching for 5 months and only at rest he more or less laughed at my morbid imagination. He didn't even have any doubts about saying it was benign which I take as reassurance as doctors like to cover their backs. He told me to get back to my exercising and relax, he didn't even suggest anxiety. Just said it can occur for many reasons. Hope you are doing ok.
Yeah definitely agree it’s been a horrendous experience for me my life has been put on hold essentially for 5 months now I am miserable . But like you I am not getting any worse so that can only be a good thing . I just hope one day we can get past this and start living again. I have been diagnosed vitamin d deficient and also b12 so I know that can cause some problems . I think we all need to keep reminding ourselves of the chances of this being anything sinister really is not worth bothering about . If only I could train my mind to think this!
Just wanted to chime in here. Maybe it can help calm some fears. I was in almost the exact same position a year and a half ago. Started with a twitch in my thumb. Was stupid and decided to Google my symptoms, which inevitably led me down the ALS rabbit hole. All of a sudden I was noticing twitches everywhere. And I really mean everywhere: calves (constantly), knees, biceps, lats, eyelids, lips, and tongue (which really freaked me out). I have even had twitches in the scalp. Was in a mild state of panic for a few weeks before went to see a neurologist. The neurologist basically laughed me out of his office. He said that most people twitch a lot, but those of us who are not obsessively focused on them don't even notice most of the time. He told me he has multiple people with twitches visiting every week. I continued having mild anxiety for a few months, but ultimately came to the conclusion that I was being ridiculous. I still twitch as much as ever, but I honestly don't think about it anymore. My neurologist was not a fan of the term Benign Fasciculation Syndrome either, as it implies muscle twitching is somehow pathological when, in fact, it is completely normal.
I've had my struggles with health anxiety before, but this was, by far, the hardest to get over. In my case the medicine was time, but hopefully this will help some of you calm down a bit.
Hi all, I am new here and terrified I have ALS. Since Xmas I’ve had constant twitching in my lower legs, mostly my calves. It is all the time. Occasionally the odd twitch in my face or elsewhere but usually a one off or only lasting a few minutes.
My muscles ache and if I tense them they feel like they’re going to cramp. I’ve got stiffness in my groin muscles and my hamstrings are so tight it hurts to straighten my legs.
I’ve had a blood test which only showed a minor vitamin d deficiency which I’ve been taking 800 units of for two weeks. No difference.
I’m so anxious and convinced myself I have ALS, even going so far to arranging things for my wife and children for when I die. I’m finding this so difficult.
Does anyone else have these symptoms?
Google tells me I have ALS and a maximum of two years to live!!!!
Hi Rousey78, I’ve had twitching myself since the beginning of January. Like you, most of the twitching happens in my calves, but I’ve had it everywhere, including my neck and face. Some days I will have almost no twitching, while it is more persistent other days. I’ve noticed that it gets worse after exercise and goes away for the most part when I’m relaxing. If I’m socializing with friends, the twitching seems to not be there most of the time. I also thought of ALS when I first started to get the twitching, but as the months have gone by and I’ve continued to get stronger from lifting weights, ALS is not on my mind as much. If we had ALS, we would both be in a wheelchair right now and not posting on here. A lot of people who have ALS would be completely paralyzed after 5-6 months have passed. There is apparently only one case in medical literature of someone having twitching for 6 months before being diagnosed with ALS, but some neurologists will say that was a coincidence. Twitching is so common that someone with ALS probably had twitching before they actually developed the disease.
I actually had an episode where I had body-wide twitching for months when I was in college, and this was more than 5 years ago.
Thank you for your replies everyone. I have just left the doctors. He said my muscle enzyme blood test was fine, as was every other blood test except a vitamin d deficiency.
He checked my reflexes and asked me to push against his hands with my feet to check my strength and said this was all ok.
He wants a second opinion and Is referring me to a neurologist. I know I shouldn’t be thinking it’s als but I’m still convinced. This is all so tiring!!
Would having twitches in my calves for a few months and being able to stand on one leg, on tip toes and play a gentle game of football in the garden with my little boy point away from als?
I don’t like reading symptoms as I suddenly get them all the day after but I’ve got a bit of a wait for a neurology appointment and I’m trying to rationalise in my own head so I’m not in this constant panic.
Thanks in advance
You don’t have ALS. I’d bet my house on it
I've been twitching in my calves for a year now. I workout daily. It's nothing. I went through that same fear last year.
Back again. I have neurology appointment next Tuesday. Scared stiff. Legs still twitching 24/7 and aches and pain, stiff joints etc.
Every time I have a bath my lower legs where I twitch, the skin feels tight and tingly. Only below the knee though.
Could this be related?
ALS is about failing, not feeling. You're describing feelings.
Positive thoughts
WiseMonkey
19-06-19, 07:17
Hi, I've had twitching in my calves (and other parts of my body) for 25 years. I have Chronic Fatigue Syndrome, not anything else. I know that when I'm anxious I twitch even more. Many people have benign fasciculation disorder as well, which is completely normal for them.
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