View Full Version : 30 year old male MND ALS terror.
Hello everyone. I’m aware this kind of thread has been done countless times before but I find myself in a really difficult place and would appreciate your help. At the end of February, roughly 4 weeks ago I got a twitch in my right bicep which lasted for roughly 2 week before spreading down the right hand side of my body. My right bicep and tricep twitch every day now, as well as my right calf, thigh, hand and foot. This has been going on for over a month now but only in the right hand side of my body which has me petrified (i do get the occasional twitch in my left hand side but not many) I’ve convinced myself that it’s MND and I’m in such a hole that I’m off work because this is occupying my mind 24/7. I right leg feels weird, almost like it has cramp but with no pain, for example when I’m driving and press the accelerator it feels different, like it never has before. I’m also convincing myself that my right arm isn’t working as it should and that I have the start of atrophy.
I visited my GP who did reflex, strength, and co ordination tests and didn’t seem to be worried but of course because I suffer with anxiety, and because I’m so convinced that this is MND, I didn’t believe her. I’ve asked to be referred to a neurologist and I’m going private, my appointment is in 4 days and I’m absolutely terrified.
I wondered if anyone else has had similar symptoms which seem to be on one half of the body?
I know exactly what you are going through (see my post further down for more details) as my left bicep has been twitching for 3 weeks constantly with no left off. Two GP appointments have got me no where they may refer me they are not sure yet. Both told me i dont have mmd as twitching comes last off all the symptoms. I beileve them and so must you. Twitching has scared me to death and for 3 weeks endless google searching is making me ill and it sounds like it has you. Have you ever suffered twitching before? I havent and i hate it, sleeping can be difficult. Yours like mine sounds like stress and nothing nasty!! Hope you feel better soon
I know exactly what you are going through (see my post further down for more details) as my left bicep has been twitching for 3 weeks constantly with no left off. Two GP appointments have got me no where they may refer me they are not sure yet. Both told me i dont have mmd as twitching comes last off all the symptoms. I beileve them and so must you. Twitching has scared me to death and for 3 weeks endless google searching is making me ill and it sounds like it has you. Have you ever suffered twitching before? I havent and i hate it, sleeping can be difficult. Yours like mine sounds like stress and nothing nasty!! Hope you feel better soon
It must have been 5 years or so ago I suffered with the twitching but it went away and didn’t come with the other strange sensations I’m having now. My worry is hat it’s travelled throughout one side of the body, today being my right hand and foot. I struggle to accept that it’s stress and as logical as I am
With other aspects of my life, with this, the only cause I can think of is MND and I’m absolutely petrified.
Thank you for your reply. It’s good to know I’m not alone in what I’m going through. I hope you’re doing ok.
I’m struggling to eat or even leave my bed at the minute because I’m terrified. It’s a truly horrendous situation to be in, when in your mind you e given yourself this life sentence and believe it to be true. Dreading the neurology appointment in fear of having my worst nightmare confirmed.
Its so hard but you are doing all the right things eg. Doctor appointments. I struggled to eat with worry but am just about back eating now. Mnd is scary but twitching is not a first sign and i have read alot about it. The other symptoms you have sound like stress i have tingling and pins and needles in my hand which seem to come and go. Did you do anything before it all started? Mine was physical exercise so unsure if twitching is related to that? Never knew before this twitching was so common! Im finding walks help me clear my mind of negative thoughts. Do you have family/friends to help??
I’m going to try and have something to eat and then go for. Walk. I worry that doing physical exercise will make the twitches worse and fuel my anxiety more. I’m driving my friends and family insane with it and I work for a small business and have had to take time of work because of this which has harmed the business too. I don’t have pins and needles or anything like that. I do use my hands for my work but it’s not massively physical. As I type this I just had a powerful twitch in my left thigh, I am getting them in my left hand side but the vast majority are in the right. It’s every minute of the day.
Thanks so much for replying, it really helps knowing someone else is out there going through same fear.
No need to thank me happy to help. My face is tingling as i write this which i think is stress related. My family too think im nuts but its just so annoying twitching and not knowing if its stress or a trapped nerve or something. I take solace from the fact two gp’s didnt seem
concerned at all. I think you going out and walking will help, i was a gym user but havent been since and im sure that doesnt help my mind. Take one day at a time, always happy to help. I also get odd twitch in right side, i think it feels left out
My right calf has a pretty much constant twitch. It’s hard to describe it. I get the big twitches but I also have a feeling of a constant small vibration type twitch in my calf. I’ve seen people describe a feeling of worms under the skin and I guess maybe this is what they’re describing. It’s awful.
The neurologist will put your mind at ease, keep us posted. Sending positive thoughts, my left arm is twitching like crazy typing this i hate this but deep down i know both of us are fine ��
Unfortunately the walk didn’t help. I felt like I was limping on my right hand side and again have a feeling I can’t descrive in my right calf. Nothing A and E can do so I guess I’ll just wait until Wednesday for my neuro appointment.
See link below
---------- Post added at 17:48 ---------- Previous post was at 17:45 ----------
http://www.aboutbfs.com/forums/viewtopic.php?f=3&t=11435
You have to stop researching diseases. My muscle symptoms were, Cold wet sensation like a water drop on muscles, vibrating muscle, muscles feeling tight sometimes painful and twitching in every muscle. I also started feeling like i had drop foot and my arms felt heavy and tired. That went alway after a while, took months tho. It doesn't go alway in a week or two. Atrophy happens because you're unable to move the muscle. If you could flex it and move it that's not atrophy. The main causes for twitching are Anxiety, Stress, magnesium deficiency, hypothyroidism, pyrroles disorder, Benign fasciculation syndrome (BFS is not a progressive neurological disorder gets better with time), Lymes disease and fibromyalgia. Anxiety twitching and BFS twitching are 2 different things. BFS is usually caused by a flu or infection. Why do you think you have ALS? I could think of 5 different diseases that cause twitching too. ALS is not about twitching its about falling. ALS is extremely rare, I've never heard of anyone i know having it.
You have to stop researching diseases. My muscle symptoms were, Cold wet sensation like a water drop on muscles, vibrating muscle, muscles feeling tight sometimes painful and twitching in every muscle. I also started feeling like i had drop foot and my arms felt heavy and tired. That went alway after a while, took months tho. It doesn't go alway in a week or two. Atrophy happens because you're unable to move the muscle. If you could flex it and move it that's not atrophy. The main causes for twitching are Anxiety, Stress, magnesium deficiency, hypothyroidism, pyrroles disorder, Benign fasciculation syndrome (BFS is not a progressive neurological disorder gets better with time), Lymes disease and fibromyalgia. Anxiety twitching and BFS twitching are 2 different things. BFS is usually caused by a flu or infection. Why do you think you have ALS? I could think of 5 different diseases that cause twitching too. ALS is not about twitching its about falling. ALS is extremely rare, I've never heard of anyone i know having it.
I think I have it because the twitching is localised to one half of the body. It started in one place and has migrated down the right hand side of my body. The other symptoms I’m having, such as my leg not feeling right when walking or driving, as if the muscles aren’t as they should be, have mr convinced that that’s what it is.
sounds a lot like anxiety. How did it all start? Were you having anxiety or getting stressed? The "cramp but with no pain" is known as Muscle Tension it's caused by anxiety. Magnesium Deficiency can cause similar symptoms. It's definitely not ALS, since the doctor found no hyperreflexia. If you pass coordination test you're good. People with ALS can't even touch their nose. Anxiety can cause very similar symptoms to many diseases, but anxiety symptoms are never severe like neurological disorders. It’s common to experience muscle tension symptoms without pain, just a feeling of tightness or strain. Here is a link if you want to learn more about muscle tension and twitching. http://www.anxietycentre.com/anxiety-symptoms/muscle-tension.shtml
http://www.anxietycentre.com/anxiety-symptoms/muscle-twitching.shtml
Please read THIS (http://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you need to.
Positive thoughts
sounds a lot like anxiety. How did it all start? Were you having anxiety or getting stressed? The "cramp but with no pain" is known as Muscle Tension it's caused by anxiety. Magnesium Deficiency can cause similar symptoms. It's definitely not ALS, since the doctor found no hyperreflexia. If you pass coordination test you're good. People with ALS can't even touch their nose. Anxiety can cause very similar symptoms to many diseases, but anxiety symptoms are never severe like neurological disorders. It’s common to experience muscle tension symptoms without pain, just a feeling of tightness or strain. Here is a link if you want to learn more about muscle tension and twitching.
Hi, no I wasn’t stressed or anxious. I felt like I was in a good place! I’ve been taking magnesium supplements since I first started getting the twitches but if anything they’re getting worse. I hope everyone is right and that it’s not my worst fear but I have an awful feeling about this. The twitches are in my quad and arch of foot, calf, shoulder, buttock, and arm, all on the right hand side of my body.
Having a bad day today. Small twitches throughout the right hand side of the body, worst in calf and arch of foot, also in thigh and pretty much anywhere in the right hand side of body. Leg doesn’t feel right when I walk. No pain just something doesn’t feel right, I can’t put it into words. Absolutely terrified.
Kingdawson
26-03-18, 15:43
Having a bad day today. Small twitches throughout the right hand side of the body, worst in calf and arch of foot, also in thigh and pretty much anywhere in the right hand side of body. Leg doesn’t feel right when I walk. No pain just something doesn’t feel right, I can’t put it into words. Absolutely terrified.
Are you saying if you was twitching on your left side as well you would feel fine?
I am twitching on my left hand side but the vast majority are on the right hand side, in particular the right leg and foot.
Please read THIS (http://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you need to.
Positive thoughts
Kingdawson
26-03-18, 17:09
I am twitching on my left hand side but the vast majority are on the right hand side, in particular the right leg and foot.
So you twitch more on one side then the other? You realise that if someone literally counted which side they twitched more...it would never be equal?
So you twitch more on one side then the other? You realise that if someone literally counted which side they twitched more...it would never be equal?
Hi :) I twitch hundreds of times on my right hand side and maybe 10 or so a day on the left. My point is that the twitches are massively more prominent on one half of my body.
I went to a chiropractor today who thinks my bicep twitching is due to a nerve in my neck. Who knows if thats correct but i start treatment soon. Have you tried a hot bath with epsom salts? Helps my twitching and is relaxing
I went to a chiropractor today who thinks my bicep twitching is due to a nerve in my neck. Who knows if thats correct but i start treatment soon. Have you tried a hot bath with epsom salts? Helps my twitching and is relaxing
Sounds positive! I’m going to have an Epsom salt bath in half an hour or so. I’ve been having a couple a week.
My fear and anxiety over MND grows every day, and I seem to convince myself every day even more that I have it.
Having a bad day today. Small twitches throughout the right hand side of the body, worst in calf and arch of foot, also in thigh and pretty much anywhere in the right hand side of body. Leg doesn’t feel right when I walk. No pain just something doesn’t feel right, I can’t put it into words. Absolutely terrified. I had that feeling before on my leg, felt like it wasn't moving correctly or that it was dragging. It happened after i was reading about neurological diseases and drop foot. It was nothing, i was just focusing on walking. It wasn't automatic anymore. Took me almost a year to stop worrying about MND. It's hard to get out once you read about it. It happens to medical students all the time they start twitching and feeling weak after learning about ALS. It's called medical students disease.
I asked the chiropractor about als and he assured me twitching is not a first sign and said he would have known something was wrong as soon as i walked in. Im positive you are fine but i totally understand your fear as that was me 2 weeks ago. You will get over this!! My worry now is im just stuck with this dam twitch forever!! When i see it going it makes me feel sick! It was so bad last night i hardly slept. Keep positive mate!
If you don't have weakness and don't have bad reflexes or spasticity, you don't have ALS. Period. End of discussion.
I’m still twitching, it’s spread now to many different areas and it’s constant. I have an EMG in 3 weeks. I’m still terrified and the anxiety has caused me to leave my job. I’m still convinced I have ALS/MND I’m finding myself needing to clear my throat all the time and needing to do little burps and hiccups often as well as difficulty swallowing food, it feels like it gets stuck near the bottom of my throat. I’m really really struggling at the minute.
Sorry you're struggling. The ALS rabbit hole is the deepest IMO. Worse than all the others. I know you'll be cleared and I hope that's the relief you need to help yourself.
You posted this on 3-24: I’m going private, my appointment is in 4 days and I’m absolutely terrified. What did the doctor say?
Positive thoughts
I found my neurology appointment frustrating. I didn’t feel like I was able to say everything I wanted to and left wishing I had explained my symptoms and the severity of them more. The neurologist doesn’t believe I have MND but because I didn’t get across everything that I wanted to I’m still not reassured. The fact that my twitching is spreading along with the swallowing issues, I’m still massively worried about it. Today the twitching has been particularly bad in the arch of my foot and it’s causing slight discomfort, not pain, just a dull cramp.
I found my neurology appointment frustrating. I didn’t feel like I was able to say everything I wanted to and left wishing I had explained my symptoms and the severity of them more. The neurologist doesn’t believe I have MND but because I didn’t get across everything that I wanted to I’m still not reassured.
This was a private doctor you paid good $$ to see. Your concerns would have been clearly addressed. What I hear is: He examined me, performed standard neurological testing based on my concerns and saw nothing that warranted further examination. Your real illness is clouding your judgement. You could say everything ten times over and it won't change the fact you don't have ALS/MND.
Good luck to you. I hope you find the inner fortitude to treat the real illness.
Positive thoughts
It’s so difficult when you have constant physical symptoms. I’ve started filming the twitches now to prove to people I’m not going mad.
Please read THIS (http://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you need to.
FMP
I become more convinced every day that I have MND. I’m having issues with a clicking in my ear. Clicking in the ear is caused by muscle spasm within the ear. I’m having twitches spasms all over, in my lips, in my neck, stomach, legs, arms, hands, and feet. I’m having body zaps/jolts and whenever I walk or do anything physical, my right leg is cramping and not as it was before I started having symptoms. I’ve started having single hiccups at various points throughout the day which again is linked to neurological conditions. I have an awful feeling that I’m not going to get good news on this one. Obviously I hope this is all anxiety and that my anxiety is getting the better of me but I’m getting all of these symptoms, non of which I had any idea were neurological until after researching them. Can’t be a coincidence.
Sadly, whatever we say won't reassure you. I highly recommend real life professional help. I hope you find some peace.
Positive thoughts
I’ve had counselling and CBT for years. Next course starts in a week. I just don’t think this is anxiety. Sorry if it seems like I’m going on ridiculous.
I twitch all over ever day. 24/7 in my feet and calves. I have BFS and so do u. As I type this my right ass cheek is twitching. Dude I've have thumpers flutters cramps nerve pain. You name it I've had it. Start working out with weights, and exercising it helps so much. I have dents in my calf and all types of asymmetry. You have to ignore it stop looking at them just ignore them. Join some BFS Facebook groups and talk with the thousands of people who have the same problems you do. Stay off of Google and ALS forums! Do not watch any videos or anything because it will only throw gas on the fire. This fear ruined nearly 2 years of my life, and I'll never get those back don't let it ruin yours. I'm married now with a son on the way, so I don't really have much time to worry about me lol
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Its not anxiety. It's BFS and it's real anxiety may have brought this on but who knows. I'm almost positive it started mine
Magnesium doesn't do anything for me I might as well eat m&ms lol. Mine started on my right side and now it's also on my left . I have noticed they die down when I'm drunk, but come back strong the next day. That's the only pattern I can figure out. Also when I'm stressed or tired or have alot of caffiene they are amplified . I got that weird dead leg feeling you're talking about but I've always been able to move it . Same with my arm it comes and goes. It's a rough ride bro but the more you accept and ignore it the better it gets pm me if u ever need to talk about why u don't have ALS lol. There are some awesome people on here who really helped me during some dark times.
I twitch all over ever day. 24/7 in my feet and calves. I have BFS and so do u. As I type this my right ass cheek is twitching. Dude I've have thumpers flutters cramps nerve pain. You name it I've had it. Start working out with weights, and exercising it helps so much. I have dents in my calf and all types of asymmetry. You have to ignore it stop looking at them just ignore them. Join some BFS Facebook groups and talk with the thousands of people who have the same problems you do. Stay off of Google and ALS forums! Do not watch any videos or anything because it will only throw gas on the fire. This fear ruined nearly 2 years of my life, and I'll never get those back don't let it ruin yours. I'm married now with a son on the way, so I don't really have much time to worry about me lol
---------- Post added at 23:50 ---------- Previous post was at 23:38 ----------
Its not anxiety. It's BFS and it's real anxiety may have brought this on but who knows. I'm almost positive it started mine
Magnesium doesn't do anything for me I might as well eat m&ms lol. Mine started on my right side and now it's also on my left . I have noticed they die down when I'm drunk, but come back strong the next day. That's the only pattern I can figure out. Also when I'm stressed or tired or have alot of caffiene they are amplified . I got that weird dead leg feeling you're talking about but I've always been able to move it . Same with my arm it comes and goes. It's a rough ride bro but the more you accept and ignore it the better it gets pm me if u ever need to talk about why u don't have ALS lol. There are some awesome people on here who really helped me during some dark times.
I’ll drop you a DM
Hello everyone. An update from me. I had my EMG this morning and was diagnosed with benign fasiculations.
I was completely terrified and let my twitches and other symptoms completely ruin my life. I left a good career, I was suicidal, I didn’t eat or sleep properly for months, I was totally convinced I had MND/ALS. To anyone else going through these worries, please take me as an example. It’s not worth the worrying. You will be fine. I believed I had every symptom and was hyper sensitive about everything happening in my body. I’m fine.
I am into my third week of sertraline which is starting to have an effect on me and I’m in CBT (again) for my health anxiety. I would highly recommend both to anyone suffering.
Anxiety in many forms has been with me for my whole life and I’m using this experience to get on top of it once and for all.
benign fasiculations.
Can we say 'told you so' ? Awww go on.....:roflmao:I've had benign fasiculations for 3 years now, and know how obvious they feel and look and thats what you were describing to me. By the way, I have a family member with MND too, so know about the symptoms of that.
What I'm really glad about, is the you are accepting the medics opinion, and have made a positive move forwards with your mental attitude - that is great to hear and a really beneficial outcome. Good luck to you !
You certainly can say that!
The anxiety was so strong though that nothing anyone said could have made me believe otherwise! It’s s crazy thing, anxiety.
Yeah diagnosis accepted and moving on!
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