Welcome to the Site! Muscle Twitching

[dave123456]

I just joined the site, although I've known of it for a while now. I'm 25 and have been dealing with muscle twitching for the last seven years. It first came on when I was 17 and I felt a discharge at the bottom of my back (tailbone area) and thought it was leaking spinal fluid. Too many ER episodes fuelled that one... but it was the start of prolonged worry. I began to look online for explanations and encountered so many scary neurological conditions that I ran myself into the ground with worry. This was all during school exams too, so you can imagine how well I was performing academically. My worry continued for weeks - searching online, in library books... until I felt palpitations (because of the worrying). I then began worrying about heart conditions... Meanwhile, I begrudgingly had the discharge investiaged, and I had a pilonidal sinus (very common condition). When the Dr told me, I didn't know what it was and nearly passed out. When we discussed treatment, he told me to live with it, as the other option was surgery - something i wasn't willing to consider amidst all the health things I worried about.At that point, I began feeling muscle twitches (what I would soon learn to be a fasciculation) and, freaked out by my thumping bicep, went online to find ALS. My life has never been the same since.Like many people here, I let fears about ALS take over my life. Everything else suffered - school work especially. I can remember excusing myself from lessons to go to the bathroom and check my legs and arms to see if any atrophy was visible. Even now, seven years later, I still flex my arms a few times a day to check they're still the same size : / Once I began worrying about ALS, I turned into a nervous wreck...After going to university and letting some time pass, it became clear that i wasn't suffering from ALS, and the other symptoms I'd dreaded for months and months hadn't materialised. By that point, lots of other things were going on and anxiety was prevalent everywhere i turned. I went through university scared to death I was going to die, and every little ache, pain, twitch, twinge, had me sat at the computer for hours in search of answers. Despite being terrified of MS or something, I did not visit a Doctor. Too afraid of what the answer might be... I did have some counselling for my anxiety for nearly two years, but we barely touched on the health issues which, in retrospect, would have been a better idea.Last year I had the aforementioned pilonidal sinus removed. I was only in hospital for one day, but dealt with it very badly - being in the one place I'd feared for years. I had to be sedated before the surgery because I was so anxious. Of course, the surgery was fine and I recovered well. Nevertheless, every time I get a bout of muscle twitching, I start to worry, and the ALS issue is still at the back of my mind.At the moment, I'm more worried about MS. I've experienced a few things recently that point towards it, although in reality they're so minor that I know they would be laughed at by a doctor. I feel changes in my speech - I'm having issues enunciating words, and the area around my mouth feels strange. Swallowing feels strange too - there's a sensation that I might gag and it makes food and liquid reluctant to go down. Meanwhile, I'm having pain in my legs - something I seem to get a lot, but usually blame on either cold weather or on over-exertion. My left knee feels uneasy when I'm walking, and after knowing of someone who had MS diagnosed after a knee complaint, I'm terrified that's another sign.I know that most people hear fear ALS more than MS, but I wondered whether anyone else has experienced the same MS fears. I know that what I'm feeling is either anxiety or BFS (I still get random twitching in all areas of my body) but I'm not 100% sure it's not either MS or slow-onset ALS, and it's scaring the hell out of me. I keep looking at the MS society website and reading about people's horror stories with MS, and it's putting real fear into me.Thanks for readingDave

 

[Outlook1958]

Hi neodave!just to reassure you: **S-symptoms won't hide for seven or eight years anyway. You would have been completely paralyzed of dead by now if your **S-onset was seven years ago. If it WAS slow-onset-**S (which is extremely uncommon if possible at all) you would have experienced weakness somewhere by now. Maybe it wouldn't progress as fast as usually, but after seven years other symptoms would have added.Well, regarding MS: I'm sorry but I haven't got sufficient information on MS to say anything about it. I'm sure other folks around here will be able to tell you something more about it. The only thing I know is that it isn't as deadly as **S and that one can have almost a normal life expectancy with MS. Therefore I do not fear it and have not read much about the symptoms... The reason why most people here fear **S and not MS is simpy because **S is the king of neuro diseases and simply one of the worst ones existing. We automatically fear the worst, no matter how unprobable it is. This is the way the anxiety mechanism works. MS might be a pain in behind, but if I had to choose between these two diseases I'd take it rather than **S.So, you are speaking of palpitations and worrying about heart conditions. Looks like I'm not the only one. For some reason, I always have been afraid of diseases since I was a child. After noticing that my heartbeat was irregular, I freaked out about some heart disease. The problem is: If I panic about my heart beating wrong, the panic will drive my pulse up. Then I will notice the palpitations and freak out even more because I'll think that something's wrong with my heart after all and that the palpitations aren't related to my anxiety after all. It once got so bad that we called the ambulance. I was then checked at hospital and at two cardiologists for heart diseases - they found absolutely nothing. Interestingly, I noticed that I can stop the panic attack if I concentrate on something else. Just turn on the computer and watch a funny movie on Youtube or something like that. I need something to concentrate on for 1-2 minutes, and then the panic attack is gone, heartbeat is normal again etc. This simply can't be a heart disease, the cardios are right. If you're getting a heart attack, it won't stop if you watch a funny movie or something.You seem to be as anxious about your health as I am. I too became a nervous wreck after having started to worry about **S. I visited a neuro because of my muscle twitches (generalized, started 2 months ago) and he ruled **S out, even without an EMG. You can read the whole story in my thread "Back from the neuro's - great relief" if you want to. I also told him about my palpitations and a lot of other strange symptoms (tickling in the chest, hyperventilation, diarrhea during panic attacks) and he said that I have something called "psychosomatic disorder". He recommended me to see a psychiatrist if it should get worse. Well, my **S-fear isn't completely gone, but it has decreased to a level that allows me to live a more or less normal life. At least for now. I do not know whether I'll ever be able to drive it out completely.Well, I'd recommend you to see a neuro. Just go to your GP and tell him about your twitching and the pain in the legs... If he doesn't give you clear answers, just ask him wether it would you maybe should see a neuro. He will then most probably redirect you. I'm almost sure that the neuro will then rule out any nasty diseases like MS. If your fear and anxiety doesn't get better then, I'd recommend seeing a psychiatrist or something. That's what I'm considering right now.And remember: All this fear and anxiety stuff can certainly turn one's life to hell. But: Fear is over - if you want it (sounds familiar... kinda).

 

[MarioMasher]

Dave,My first fear was actually with MS too, not ALS. So I know exactly where you are coming from. I doubt I even would have cared about ALS if it hadn't been for some careless and ridiculous posts here on this very board.Two things helped me get past my MS fears:1. The knowledge that, in many cases, an MS prognosis is quite different from what it was 30-40 years ago. These days, lots of people have MS and through treatment lead virtually normal lives. Even though MS has been ruled out in my particular case, it was pretty easy to reach the "Meh, MS wouldn't be the end of the world" stage just by doing a little research about it. Sometimes MS is really bad, sometimes MS is really not. Odds are that if you have gone 7 or 8 years without it becoming debilitating, even in the worst case scenario yours would probably be the not that bad kind. That's the kind of logical thinking that always got me past my MS worries.2. There was a great post by a doctor here once (see if you can find it in the search archives) that basically said that any time a patient came into his office with a laundry list of symptoms, he knew it was health anxiety. The minute they pull out that list, he knows what he is in for. He said that it is almost 100% correlation with "Number of symptoms" and "It's not MS." So there you go.Check out the website anxietycentre.com and see if it sounds familiar to you. Remember, just because "it's only anxiety" that doesn't mean it is harmless. Longstanding anxiety and nerve frazzling can mess you up too. The only difference is that with anxiety it is perfectly treatable.

 

[DirtySouthwestGuy]

Hi Dave,You have no idea how much i have worried about thinking that i have MS. Since March of last year, I have been to hell and back and then some. I have spent hours and hours on the internet googling MS and visiting MS websites. I have sat at my computer until the early hours of the morning searching and searching. I have driven my friends and family insane with my constant, obsessive worrying. I can't mention it in front of my husband anymore, he has really had enough. My worry all started with tingling and numbness in my left leg and ankle, accompanied by a weird feeling, to this day i can't describe it. I have a burning feeling in my feet and of course the twitching which at some points has been 24/7 and kept me awake all night long.I have had numerous visits to my GP and have seen a neurologist and had an MRi of the brain. My neurologist has told me that I don't have MS. Still I search the internet, carry out all sorts of strength tests on my arms and legs, testing myself all the time. I've had a truly miserable time. Would just love to be able to move on from this and forget it all. I have drawn great strength from this website and everyone on it with their own stories. Sorry to hear that you have been feeling this way too.Zoe

 

[dave123456]

I just wanted to thank everyone for their responses. It's very encouraging to know that I'm not the only one experiencing this worry.I know I have problems with health anxiety, and I really do need to see my doctor about it. I just have this fear that if I tell him about twitching, leg aches, and other problems that he'll send me off for MRI scans and such. I know that would probably be a good thing, but I just don't know if I could cope with the stress all that would cause right now.As for the MS fears; I know that MS isn't nearly as bad as ALS and I appreciate that even if I do have it, it wouldn't necessarily effect my life expectancy. Nevertheless, I have problems distinguishing between what's a BFS symptom and something else. I'm satisfied that twitching is not an MS symptom (I've had it for all this time with no major changes in symptoms), but when I get days when I don't seem to be speaking properly, or when my voice is hoarse. If I'd never read about MS or ALS perhaps I wouldn't think anything of it... but I get so scared. Again, thanks for the responses. Dave.

 

[LisaQ.]

Hi Dave, MS was my choice of scary diseases to self-diagnose. I did such a fine job of it, I actually got a hospital internist to diagnose and treat me for it. As for those who think it is better to have MS than **S, I would have begged to differ. MS is unpredictable, and you can't make many plans with your life. Yes, there are treatments, but there are also sudden exacerbations that leave you disabled for months at a time, if not permanently. Indeed, people CAN lead normal lives with MS, but the lack of control and the variability of severity from person to person made it terrifying enough for me. Let's face it, both diseases suck. No doubt about it. Having said all that, nothing you've written raises any red flags for MS. Not at all. And you are TOO young for **S. Wipe that off your worry-list, it just isn't happening. MS does not generally present with swallowing difficulty. That usually comes much later in the disease. The most common presenting symptom is double vision or partial/total blindness and pain in one eye. It can also start with tingling. As you so astutely observed, twitching is not a symptom, but neither is leg pain. If you knew someone who had "knee problems" before an MS diagnosis, I would have to hear more about it, but I would say it was unrelated, unless their leg became WEAK. Sudden loss of limb strength or sensation (not talking mild tingling, but NUMBNESS, here,) is characteristic of MS. "Uneasiness" in your knee, and leg pain is not. And, in case you didn't know this, bfs causes tingling and stiffness and swallowing issues as well. The MOST important thing to note is that MS symptoms don't just hang out for a few minutes or hours, then subside. They linger for days/weeks, or even months. There are physical lesions in the brain of an MS sufferer, which compress the neurological structures and create ongoing symptoms until the lesions either remit, or the patient receives steroid treatment. The symptoms are suddenly there, and then they gradually subside, until the next attack, which is usually in another system or body part. There can be months or years between flares. The swallowing and throat symptoms you are describing are probably globus hystericus, which, if you've done online research, is a common symptom of anxiety. You could also have reflux disease, which is easily treated with over the counter medications. Anxiety sounds like your most likely culprit, here. Blessings, Sue