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Found 28 results

  1. Where do I start? I was overcome with fear about ALS because I had a sudden onset of twitches and jerks. Then I had pain in my foot and my toes got weak. Went to the neurologist. Found out I have a gluten sensitivity and my twitches could be cause by that. Also found out that I have low vitamin D which could also explain the bone pain. In fact, once I started taking vitamin D my foot feels better but not completely. For the past week, my foot will shake back and forth 3 or 4 times when I am falling asleep. I know about hypnic jerks, but I read that it is only one single muscle contraction. My leg shakes like I trying to shake something off my foot. Anyone else experienced this?
  2. Hello, I wanted to put my situation out there after reading a lot of other's fears and situations and see what other's thoughts were. This will be sort of lengthy. My story seems to be similar to others on here, I'm a 30 yr old male who is very active, running and strength training 6 times a week. I work a pretty demanding job that puts a lot of stress on someone, especially during peak times (I work in ag, so fall season). This past Thanksgiving week, myself, wife and our 1 yr old who is a terrible car traveler ventured off to visit family on an 8 hr drive. I was very stressed about this trip and admit I let some pretty little things get to me. I noticed while driving a muscle in my left arm/shoulder twitching. This persisted to the next day and I showed my wife, she thought it was weird, but I'd gotten random ones before, typically after a heavier training day. The week goes by and I honestly am not sure if the twitching persisted. Going into the week, I had some other stressful stuff come up, top of which a mole that was biopsied because it looked funny. I also had had some sensations of tingling in my feet and hands, prior to this for quite some time, but hadn't thought much of it. For one reason or another, I noticed my left anterior deltoid shoulder muscle had a consistent twitch (still does) and this got me someone concerned. Was it the same muscle from over a week ago? So, I start looking up tingling and twitching, see MS, get pretty upset about that and this runs into the next weekend. That Saturday I am sitting there and my right arm completely siezes up, totally strained, couldn't hardly close my hand, this really freaks me out. So I go to google again and see ALS. This is where my demise really happened. I'm fairly concerned and decide to make an appointment with my doctor that day (we have an online portal thingy, got it scheduled for the next Monday). I am trying to stay busy the rest of the weekend and not think about the twitching that happening in my left shoulder, but the right arm thing is really bothering me. I will say, I knew what ALS was, but didn't realize the severity of the disease if you had it, I search life expectancy and completely drop, like couldn't function. Not sure I have ever felt more broken down in my life. That night I don't sleep a second, constantly clenching my right arm, feeling my strength disappear. My wife basically holds me all night because I am having multiple panic attacks. I'm sure I have ALS and won't get to see my son grow up or our expecting child. We go to the doctors, I explain my situation and my fears. We do the basic neurological exam, check out fine to the doc even with my right arm not feeling right (I also thought my right leg was now hurting). Doc can see I am distraught so she says lets run some labs, look for increased creatine kinase, guess that can be an indicator of ALS, if it comes out clean, your good, it's for my peace of mind. She also prescribes some anxiety meds to help me out. So we do that and labs come back great, I'm so relieved, and I'm feeling pretty good for about 12 hrs. But, I look some more stuff up on ALS, realize that blood test isn't all that conclusive and I'm back down the hole. My wife has me go to a chiropractor, he thinks I'm fine but works on my back and arm just to try and help things feel better. I get a message to try and loosen myself up. Nothing is helping, I'm emailing my doc over and over every day. I'm able to work out, pretty much normally, lifting basically the same weight, but my grip strength is reduced in my right arm. She says, we can do more tests if that would help you, but doesn't think I need to. I tell her I'll let her know the following week (this would be about 3 weeks after original symptoms). That weekend actually goes pretty good, my arm seems to be improving, and I'm like "This wouldn't happen with ALS, it only worsens, right?" So I tell the doc, nope, don't need more tests, I'll see ya at my regular physical. I should have just scheduled the test... I played a game of ping pong and again, my right arm seizes up, I still have twitching in my left shoulder (I check it about 100 times a day) and I have ALS. I can't handle it, emailing my doctor, I start to get body wide twitching, and another hot spot, my right hand (especially when I'm my mouse at work). Doc has me come in again, she does more reflex tests, scrapes my foot all that, seems fine. But I show her the twitch in my left shoulder (it's the only real consistent one), and with that, she says there's enough for her to refer me to the Nuero for an EMG on both arms. But also wants me to start really tackling my anxiety. Puts me on a more long term med and asks me to see a therapist. This was the week before Christmas. I see a therapist, talk to my pastor, all of it, because I have to do something to get back to normal. That all helps, and the week of Christmas doesn't go too bad. Right arm seems to heal up nice, I'm able to work out that week and I start to feel better. But I still have twitching at night, also have tremor like sensations when I wake up from a nap or sleep sometimes, really disturbing stuff. So now we come to tomorrow, when I have my EMG scheduled. I am fairly confident it won't show ALS, but still worried all the same. It's been about 7 weeks since my initial symptoms, wouldn't I be worse if it was ALS? Thanks for anyone's comments.
  3. Solafide3

    Defeated by the fear

    I was feeling happy last night from all my support here. I was finally calm. This morning I woke up and the jerks I had before my twitches are back. It’s like the jerks you get before you fall asleep, but during the daytime. They happen maybe 3 times in 5 min. My leg will jerk, my jaw, my back, my arms. It’s just one quick movement, not a twitch. Is this Hyperreflexia like they talk about in ALS? Every single time I think I’m ok something else comes to haunt me. I haven’t gotten out of bed yet, I’m just crippled with fear. I haven’t found many people who have the jerks and that’s what scares me. I have been testing my reflexes (yes I know I’m not a doc, but my fear does not care) and my legs kick way up in the air. Brisk reflexes! Also read that these jerks are a symptom of Hyperreflexia. I’m drowning and I can’t stop it
  4. Dixon444

    als?

    I think I'm having als.. around christmas I noticed my body twitches almost everywhere but later on I convinced myself it is not ALS, it's not a persistent twitching... my pinky went numb for once... but now I don't think those are ALS indicators... just because they're not constant and they aren't getting worse but better instead anyways.. after I convinced myself it is not ALS I thought something like that - "HMMM.. What about Bulbar onset als??" then I focused on my tongue... now my speech seems slurred but no one noticed it besides me... they all say I'm talking just fine... some say I'm actually talking too fast (this I can agree with) but then I read more about bulbar ALS, now I never experienced twitches in my tongue.. just the slurring thing and the feeling as if something's stuck in my throat(occasionaly)... Not actually sure what slurring is supposed to mean but here I'll explain my experience with it... Occasionaly I'd say a word containing S like Sword and (almost never) I'd pronounce it Shword(started when I thought about the bulbar als..) and the R sound, sometimes I miss it completely but again very rarely and after the thought of bulbar als... I usually take naps when I can and I remember taking a short nap for about 10 minutes when I woke up the slurring and the feeling as if something was in my tongue + the feeling of my tongue being heavy went away then it came back once I remembered.. (This makes me think it is not als but then again I became worried.. it still feels like this and my tongue is very tired I thought about it all day long... maybe when you think about an involuntary muscle actions and try to cntrol them you actually do them bad by "blocking" them, so to speak).What do you all think .. Is this somethiing I should worry about??? It make me worry a lot .... even tho I'm pretty sure its not als
  5. Solafide3

    ALS I have hit rock bottom

    Hi everybody, my name is Erica and I’m a 30 year old female. I started having jerks all over my body before Christmas. Enough to move a limb, but not enough for anyone to notice. Well that went away and then came the muscle twitches. Of course I googled. ALS came up. Of course I saw BFS too, but there is so little on the internet about BFS, is it even a real thing? I know the twitches can be from anxiety, but they came at a time where I’ve been pretty calm. I was tested for nutritional deficiencies, all fine. I do strength tests daily, and can’t tell if the weakness is in my head or not. I cry every day because the thought of leaving my 5 year old without a mother kills me. I have a neurologist appointment soon, but in the meantime I can’t function. I know if the doctor gives me the all clear I’m just going to tell myself I went too early during the disease and they couldn’t detect it. Has anybody else had muscle twitches for weeks or months? I pray with all my heart that the fear will just go away. I want to be happy for my family’s sake. I want to do good with my life. I feel like I should be recording stuff I want to tell my family so they can watch it after I die. They look at me like I’m nuts and do not understand how real the ALS fear is to me. I guess I just want to know that I’m not alone. I don’t know. If you have read this, sorry for the rant, but thank you for your time. God bless you all.
  6. Hi everyone, I am having a really rough month. Let me start out by saying that I have a really bad health anxiety/OCD condition that I have been on and off dealing with for the last 3 years. I'm currently in veterinary school and my anxiety levels lately have been going through the roof. This last month in particular has been rough as I have not been sleeping well, I have been dealing with my cat that had a horrible illness and had to get multiple procedures, surgeries, biopsies, a feeding tube placed, etc. It was right in the middle of midterms and it was incredibly stressful running around taking him in and out of the hospital. I was incredibly worried for him and freaking out it was rabies. I went to the hospital to get the rabies shots. After a while I was convinced it was ok and I stopped worrying about it. After all the stress of this, I started to develop a finger twitch in my right index finger. it happens all throughout the day both at rest but also when im using my computer or after I perform an action and then rest. It's been causing me a lot of grief over the last week and I saw 2 primary care doctors about it. Both of which refused to refer me to a neurologist and told me it was most likely from stress or anxiety. right and sometimes left arm. IDK if those are just from being more anxious and hyper-vigilant. Other things have started happening like pin and needle feeligs in my left foot and percieved weakness in my I've been worried sick about ALS, PD or MS. 6 months ago I was taking Accutane and around finals time I had parasthesia in my left arm. It freaked me out so I went to the hospital numerous times to get cervical and brain MRIs...they found nothing. I also got tested for Lymes, had general panels done at the hospital and had my thyroid levels checked (all 6 months ago)...nothing wrong. It was dismissed as anxiety or problems from the Accutane, which I discontinued and started feeling better. Im worried the paresthesia in the left arm and the finger twitching in the right index finger are related and indicitave of a neurodegenerative disease. I used to be treated for anxiety and I was taking meds. I went cold turkey and stopped taking them out of laziness about a month and a half ago. Dumb, dumb decision I know, but my anxiety has gotten out of control since then. I started seeing a new therapist and I am getting back on my medication for good. I don't know what to do. Does this sound like a neuro disorder or just anxiety? I know people here arent doctors, but have people experienced this? Just twitching in ONE finger due to anxiety???? I guess there is the pins and needles feeling in my left foot, but I'm just freaking out and I cannot think about anything else. Is it likely to just be anxiety? Should I just trust my primary care doctors and attribute it to stress??? Any comments, advice or help would be much appreciated. Im having a hard time functioning and I'm so close to going to the ER to just ask for more tests. Thanks so much all, Sorry for the rant.
  7. Jremtx

    Why

    Idk why I can’t get this thought out of my head, that I have ALS. I still twitch constantly everywhere especially in my left calve, I get nervous and scared side I noticed that left calv is smaller and has a kinda deep dent. Ive already seen multiple docters and all of them said I don’t have ALS, didn’t even refer to a neurologist. I’ve recently been looking on the ALS forum and everyone does the EMG to know if they have ALS. My docter(s) didn’t even feel like it was necessary and I always have negative thoughts assuming I have it. as long as I ca remember I always had twitching, everyday but ever since I googled “als” my life has been a nightmare for almost 3 months. I’m tired of living like this thinking I can’t enjoy life again. I’m sorry to keep posting about this but it’s so frustrating.
  8. Cloker

    Crippling health anxiety

    I am 22 years old, and the past couple years for me have been some of the most difficult times of my life, from a mental standpoint. Health anxiety is something that has affected my sister, and I never understood her pain, until recently I have realized I am going through the same thing. These past 2 years have been extremely difficult, and it actually caused me to quit a very good job and move back to my hometown, which was something I never thought I would do. The more frequent it is becoming, the worse the incidents are. Lately, the past 3 months to be exact, I have completely convinced myself that I have ALS. I started working 68 hour weeks on nights, and started twitching in my eyes constantly. I tried to ignore it to the best of my ability, but never could completely block it out. Then one night, I started to twitch right above the knee on both legs, along with a feeling that I just ran a mile. Dr. Google had come up with ALS, and of course that is what I set my mind on. The constant twitching and weakness went away, but my worry of ALS just got worse. Now, I have random twitches all over my body, and a perceived weakness in both shoulders and my right hand. I went to the doctor, and he referred me to a nuerologist, but the appointment is 3 months away. When I can keep occupied, the twitching and perceived weakness seems to go away. But once it crosses my mind, it’s there again. I can’t help myself from reading every google article that comes up about ALS, as well as patient stories. It’s getting way out of control, and it is affecting my social, work, and everyday activities. Any help, comments, tips, and just a conversation would be greatly appreciated. Thank you all.
  9. kaosbros

    Als muscle atrophy

    Does muscle atrophy begin before loss of movement. I so far have just twitching.. all over. But noticed I have lost a coupke pounds. Im scared its atrophy. I thought the wasting started when the muscle coukd no longer work. Online it shows it as an early symptom.. is this accurate???
  10. Hello, Not sure how to begin but this is my first post. I am 44, active and yes, i suffer from massive anxiety attacks. I didn't realize thats what it was until I recently had to admit something was wrong with me. I catastrophize everything health wise. The latest is an ALS fear that has left me useless. I had itching on an arm that started awhile ago, it got worse when i was stressed but it got really bad and I went to get it looked at. Sent me to a neurologist and had an emg of my arms done. Before he even got to the needle portion he said everyrhing was normal from the surface testing and do I really want the pain of the needles. I must mention that by the time my appt came about the itching had subsided and the numbness in my hands was attributed to my being an avid mountain biker for many years. However I told him that my legs had begun recently to have twitches and were uncomfortable behind my knees. Both at the same time. Right worse than left but I had some issues there before. He said he could only look at the arms due to the requisition that was filled out. Ok.. I left fairly happy. Fast forward a month and the legs had settled or at least I had let it go. I was sitting at home having a conversation and felt lightheaded. Went to bed and woke up with headache and just a weird dizzy feeling, ( bare with me im getting to the point ) i went to spin class that night and went home to bed only to wake up feeling lousy and weird again. So I called to make appt. Went to anither spin class and woke up the next day and all of a sudden the legs were attacking again. I assumed I went to hard and was dehydrated. Went to my appt and he had an mri scheduled of my head just in case as I had told him my nerve issue from previously. That was 2 weeks ago and I have had all over twitches, at rest. My wofe said it was my anxiety from reading all the google info about als. But Insaid hiw could I be twitching at night?? A couple times they were bad enough to jolt me and she felt me jump. Those ones came as Inwas just on the verge of falling asleep again. I cant think straight. I can't work. Havent worked out. Have thought my legs were getting weak. I test myself daily. Here's the kicker. I got a cancellation to see a neuro . He was great. He did a quick look over and reflex test and asked me if I was a hypochondriac. He didn't insult me.. he said it's ok so am I, he said he has died 3 times of ALS and most people in the field have had this issue. He said we can do an emg but he said he felt I had benign fasciculation syndrome, and if I get the test theres he felt it would be fine but that test can come up false positive or negative and push me further down the rabbit hole. I chose not to. Trying to be strong and take his advice. Needless to say i have managed to talk myself into thinking I still have it as recently i have gotten pain in joints and my biceps feel like they are crampingetc.. i get these moments of absolute despair and have called back for the test. But now im worried its moved from legs to arms already.. i coukd really just use people with this experience to talk to me.. im affecting my marriage stressing her out and my kids are worried about me. I cant even leave the cpuch in 2 weeks.. Anything helps.
  11. For the past week I have been experiencing a twitch in my left arch of my foot. it is usually a strong twitch that is visible to the eye. Sometimes I just feel the buzz in my foot and see nothing. I noticed that when I flex my toes in a strong downward motion, I also see a finer twitch on the bottom of the sole of my foot, this one really freaks me out. I'm terrified of ALS. I feel like I can see muscle wasting on my left although it would be extremely small difference and perhaps the deviation in my foot always existed. I'm still able to my walk on tippy toes and heels and when I try to push my big toe forward or back, I able to resist pressure with my toes. I feel "funny" when I walk but I know anxiety can do that. I had my annual appointment yesterday, and showed a video of my foot twitching to my doc. He said he did not see muscle wasting. He suggested that I try arch support in my shoes as I have high arches. If the symptom does not go away in a month, he said he'd refer me to a neurologist. I'm starting a new job on Monday and I can't have this being such a distraction on my mind. It's all I can think about. I stare at my foot and test my stength constantly. I am Embarrassed about this however I need to be honest. Any help would be very appreciated. Thank you.
  12. Hello everyone, I am a 19 year old HA sufferer, and this time ALS is "back", but I am pretty afraid. TO be honest, I AM QUITE sure it might be ALS. About a month ago, my shoulder started twitching out of nothing, I immidietely thought of ALS, during the following week, I started getting pop twitches everywhere in my body, and continious twitches (would last a few minutes) in random body parts. However, during the weekend, I got a twich in my tricep, which lasted quite long, and was changing speeds, it was slow for a while and suddenly would become very fast. I got the same thing the next day, and suddenly it became localized. The thing that worries me is, that it was a twtich that would only have 1 continous episode each day, and then would not show up until the next day (even though I was anxous about it) and it was very random, as I said changing speeds, would be slow, there would be maybe half a minute interval between another twitch etc...I was observing it, and at first I thought I got better with movement (which I think still does...like when I go for a walk lets say - must be long) and I come back, I dont feel it then. I also did not feel it for like 3 days and then it came back (we were driving to a football game with a friend, and I got the twtiching in a car, but when we started moving and got the ghe game, it disspeared, so I was like yeah, it was anxiety, but after 3 days, it came back when I sat, and relaxed to watch a football game). This was like 3 weeks ago. Then we went for vacation, did a lot of hiking, I did observer my tricep during the hikes, and it did started twtiching once during a hike. However it was not so constant anymore on the vacation, and after the vacation, my tricep stopped twitching completely. All I was getting very full body little 5 second twiches or pop twiches mainly in my calves, thighs, but also in the tricep though. However yerstrday, I dont know how It occured, but I got really anxious while on the internet (I have been anxious the past month of so becuse of these twiches, but not so much as yersterday) and my tricep started twitching again, it is lasting also now, I went to the gym yersterday and I was still getting it. I walked home from the gym and it did stop for a while, but came about in about half an hour. Stopped before bed time, I woke up today, and in about half an hour, I started getting the twtich. These one are very fast and poweful. I dont feel them when holding my hand tight, which is weird, and also I dont feel them during walking (they might be there, but I just dont feel them because my hand moves during walking) I am afraid this is ALS because how random the localized twitching is there. If it was anxiety, would not it be there 24/7 ?? How come it went away for more then a week and suddenly came back ? Probably stronger and faster, but I dont know. I have been on the BFS forum, and I have not found a similar case to my, most people were twitching localized constatly, not so randomly as me....Also I read that twigching of dominant hand and interminnent twitching (which I have) point towards als. Also it cannot be anything in the tricep such as a pincehd nerve etc.. because as I said at the beginning, in started in the SHOULDER. I have been to the gym, still can lift 20 kg dumbells for my pecs (this excercise also uses triceps), still can do dips, etc. etc...seems like my lifts are still the same if not stronger, but I did read some stories, even studies of ppl who got twitches before weakness. Do you think this type of pattern of twitching can be anxiety induced ? I know I should go to a neuro, but the appointments are far away, and I dont ahve EMG covered insurance, which I would ahve to pay and I dont have much money atm (parents are not willing to pay, becuse they already paid for a bunch of ultrasound, colonoscopy etc..) Any advice ? Anyone with a similar thing ? Thank you so much.
  13. enidoreilley

    Tongue now? Dr update

    I just left my neurologist. He knows me pretty well and knows how anxious I am. I told him about my temporary lip paralysis and my quivering lip and was really upfront about googling too much about ALS. He did the normal neuro screening and strength tests and everything seemed fine, I think. He took the lip thing seriously, though and told me he was going to code the appointment as a "screening" instead of "follow up" which is how it was booked (for an existing condition) and for some reason that really scared me. He told me to keep a journal of my neurologist symptoms "in case". He ordered CK serum levels (which check for evidence of muscle breakdown in the blood). The whole thing freaked me out. Add to that that on my way to and from the appt I was snacking on some pretzels and my tongue felt extremely tired. Like, muscle fatigue. I just want to get through the next few weeks without having anymore emotional breakdowns and everything feels so real to me. If anyone has any words of reassurance, I would appreciate anything.
  14. Hello everyone, I'm 25 years old and have had health anxiety for as long as I can remember. I google my symptoms and I start to think the worst... At one point, my anxiety became so crippling that I was bed bound for a month and lost over 20 pounds. That's really not an option anymore, as I have a 2 year and 8 month old that depend on me. Still, I feel like my fear of ALS is spiraling out of control. I'll start with, I began having tingling and numbness in my hands two years ago. My doctor wrote it of as carpel tunnel... Well, since then it has become much worse. As well as my left arm feels really weird. This may be because I carry my baby's car seat with that arm. I haven't notices any muscle weakness or atrophy, from what I can see or tell. I can still lift things, walk normally, talk/swallow normally, and etc. I want to say that I've always had muscle twitches here and there. For the last two months though, I've noticed that I was having them multiply times a day. The worst being maybe anywhere from 50-100 muscle twitches or spasms a day. The are in my arms, legs, buttocks, and have gotten them a few times in my face. Went to the doctor, and saw a nurse practitioner instead of my normal doctor. She said that with my symptoms, the first thing that comes to mind isn't ALS but a vitamin deficiency or something else. Also, she said that she wanted to do a nerve conduction test for my carpel tunnel. Blood was drew, and I have low vitamin D and borderline low B-12. Was told to take vitamins and that was it... I have been taking left over prenatal vitamins for almost the past week, and I have noticed the muscle spasms have lessoned a bit. I also suffer from stress, depression, and anxiety... And in the past few months, I have been really stressed Still, I can't help but shake the though of ALS and am absolutely petrified. Can anyone offer some advice or reassurance please? Thank you.
  15. AmelOK

    One year ago today...

    One year ago today, I cam home from work and watched some of the Presidential inauguration. I fell asleep watching on of the inaugural balls and woke up, changed out of my clothes and went to bed. I felt my legs twitch and I layed down in bed. I had been feeling down for a while, work things, family things, felt like a failure in life, had gained a lot of weight since my early 20s. I felt my legs twitch again and decided to google muscle twitching, perhaps the worst thing I've done in my life. We all know what the result is when you google muscle twitching so I won't go into details but I immediately felt my heart start to race and my breathing shorten. I knew Immediately I would die a slow death, where I'd worsen little by little. I knew the economic strain I'd cause on my family and how it would likely ruin them. I regretted that I'd never get to "fix" the mistakes I'd made in the past. I started to think of it might be cheaper if I took my life and at least I wouldn't cause a strain on my family. That would be the first of many sleepless nights. I tried to calm myself but nothing happened. It was pointless so I got up and went to the gym as that used to make me feel better. Not having been to the gym in months I could hardly run on the treadmill or lift weights. I knew that lifting weights would slowly not be a reality for me anymore. I didn't last an hour, I would start to run and my hear would just beat faster. I felt like I would faint. I went home and got ready, heart still pounding. I went to do a work presentation at a school, thinking at any moment my legs could give out. I went to my office for a special Saturday event and took the stairs as many times as I could to remember that I could still take the stairs and that soon would also not be a reality. If I got 4 hours of sleep that whole weekend it might overestimated. I got up Monday and went to work, heart pounding, blood pressure really high. Got home and took my blood pressure, again high. Maybe 2 hours of sleep before I'd wake up and feel the collar of my shirt drenched in sweat. Tuesday, heart pounding, high blood pressure. Went to Urgent Care. They wouldn't see me since what I described to them sounded like a heart attack. Had my parents drive me to the ER. Blood pressure was normal, EKG normal, Chest X-Ray fine, blood tests fine, everything was fine. I felt better but that night would prove sleepless as did many other night for the next month or so. If I did sleep, I would wake up, drenched in sweat. If evrything is ok, why do I feel awful? I would think. Followed up with my doctor. He prescribed weight loss and a mild sleep-aid. Good I thought, if I am going to slowly die at least I can sleep at night. The sleep aid helped some but I would wake up in the middle of the night and say ok maybe I'm not sick so let me google a test I can do for neurological diseases. I would fail the standing on one foot with my eyes closed. My knee kicked a little too erratically in my opinion whe I did a self-reflex test, all serving as confirmation that I was extremely ill. I deserve this I thought, I squandered educational opportunities, dishonored my family. Every bad thing I did in my life came back to haunt me and serve as proof why my fate would be so grim. My heart would pound and race almost daily. I learned to live with it.
  16. healthworrier92

    Afraid of **S

    I'm new to the forum, and I'm desperately in need of perspective on the ordeal that I'm facing right now. For the past year I have developed a mounting fear of ALS. I have had HA for most of my life (I just turned 25), but it seems to happen in episodes that last a few months or so, and then disappear. I have only had 2 major ones that I can remember: one when I was 16 and one when I was 18. My most recent one, and the one I'm currently going through, is being afraid of ALS. I feel like my current worries began after my uncle, whom I was very close to, passed away relatively suddenly in July of last year. He had a stroke, and three days later he was gone. It was devastating. Of course he wasn't the healthiest person in the world, and he was in his upper 60's. But after that, I have succumbed to the belief that I am suffering a serious illness and am destined to die young. As far as symptoms go, I felt fine for the first month or so after he died, but about a month after I started experiencing lightheadedness and dizziness that wouldn't go away. I originally thought it was fatigue, dehydration, etc. and would go away in a couple days, but it persisted. I went to the doctor, ER, countless times and was told nothing was wrong. Of course, given what just happened that only make me believe that I must have a fatal condition that can't be detected by normal testing. So the dizziness got worse, resulting in me missing work and essentially putting my life on hold for a brief period of time. Thankfully, after more doctor visits and a brain MRI that showed nothing was wrong, the dizziness subsided and I haven't noticed it since. What replaced that in my mind was a fear of ALS. That was a disease that never even crossed my mind until one day I came across a story on FB about a girl in her mid or late 20's who had been diagnosed. Of course, logically speaking I knew that is extremely rare but now my thoughts turned to "if it can happen to her, it can happen to me!" What I would say has followed that has been what I believe is the progression of symptoms of ALS (in my mind, at least). It started with my hands feeling weak but with no impairment of everyday tasks. After more than a year, I don't know if I would say my hands feel weak or they ARE weak. I can't tell the difference. I'm noticing subtle (major to me, but not sure if they're subtle to anyone else) differences in the way my hands are working. For example, my hands don't seem as dexterious and nimble when typing or writing. I used to be able to type really fast without making too many mistakes, but now I feel like my hands move so slow and stiffly, and I'm always making mistakes. It doesn't look like I can move my fingers from side to side like I used to. My left hand seems like it's slowly weakening, and now I notice it progressing to my right hand (I'm right handed). I have no pain and some twitching (not widespread), but when I do twitch in any muscle the muscle feels weak afterwards, like it can't move like it used to. Also, when I try to extend my fingers, the middle joint just gives out like it doesn't have any strength or force (it seems like it's been spreading to each finger starting in my left hand). As for the throat symptoms, I've noticed changes in my voice. My voice doesn't feel natural, like when I speak it's not the same pitch or tone that I'm used to feeling. When I try to talk or have a normal conversation with a person, it doesn't take long before my voices feels tired and I'm like out of breath. Also, when I speak my tongue doesn't seem to move as quickly or as nimble as it used to. To me, I sound like I'm tripping over words, mispronouncing, slurring, etc. I constantly ask my wife how my speech is (and have been throughout this entire ordeal), and she tells me she doesn't notice any difference. I was referred to an ENT because I told the doctor all that I was feeling, but she said it was more to allay my fears than because something was wrong. He didn't find anything wrong (this was earlier this year) but referred me to a speech therapist when I told him my symptoms. I've been going to the ST on a regular basis since June of this year, and she has been finding little things in my speech/voice that aren't right, but she has told me repeatedly that she is trained to pick up on every little thing, and that what she hears the average person will not notice. I also flat out told her my ALS fears, and she said that nothing about my voice or speech suggested ALS. (Of course this was at the beginning of our sessions, so now I'm wondering if I have progressed to the point when ALS would present more of a difference) Overall, I'm just tired of thinking that I have this terrible disease. I know the odds are greatly against me having it, but why do I have all these symptoms that I believe so clearly point out to ALS? I've also been going to the neurologist every few months or so since last year, originally for the dizziness but now because of my recent fears. The last visit (2 weeks ago) I had scared me more than ever before, because he performed a grip test on my hands that found my left hand was significantly weaker than my right. This seemed to confirm all of my fears an suspicions, and now ALS (and the fear of having it) have been all I can think about ever since. I have an EMG on the 28th, so I know I'll start to get better answers after that. The thing is, I'm afraid of having ALS but some part of me is just resigned to it after everything that I'm experiencing (or seeming to experience). The part that's hardest for me is not knowing how much of these symptoms are my anxiety, if any, and how many actually indicate something really wrong. I just want to be able to be at peace and know for sure what's happening to me. Sorry for the long post guys, but I felt like I had to get everything out there. I've been posting the same story on the ALS forums (yes I know, bad idea) and they have been telling me it does not sound like ALS. Of course, the anxiety part of my brain then starts saying "they haven't seen you in person. if they did maybe they would say something different." I'm so glad I found this forum as I'm hoping it corresponds directly to what's causing me to experience all these things. I would much rather have HA than ALS, obviously. Thank you.
  17. larizza

    I am so afraid of ALS

    Hello, I am a 50 year old woman from Sweden,and I so scared of ALS because my tongue is twitching. I have a lot of shakings and tremor in my body,but most of it can have other causes.Ihave withdrawal symtoms from benzo and zopiclone, and I might have some nutritional deficiences after bariatric surgery. I also have polyneuropathy in my feet probably because of b12 deficiency. But my tongue! Can tongue facics be something other thanALS? I took an EMG in 2005 and it was clean,but I could have developed ALS after that. I am so scared and depressed now. Can anyone help me with this anxiety? Thanks
  18. liv07

    Bulbar ALS fear

    Hello. I am a 49-year-old woman in the grip of the worst HA of my life. I am terrified/convinced I have bulbar onset ALS. Four months ago, admittedly during a period of great physical and mental stress, I was horrified to find my tongue was curling BY ITSELF on the tip. This sent me into an immediate panic attack and I wound up in the ER, where the attending doctor shrugged and told me it "either was or wasn't" when I asked him if this was the start of a neurological disease. The spasm or whatever it was calmed down, but I noticed that my tongue continued to quiver and twitch. It hasn't stopped since. But the thing is, I don't know if it's always done that. I've never paid much attention to it before. I googled and of course ALS came up. Since then, I have been monitoring my speech incessantly and I find myself tripping over words and mispronouncing things. I find swallowing difficult. I haven't aspirated, it just feels hard to swallow. Of course, both these things could be caused by my anxiety and intense focus on the very acts of speaking and swallowing, acts that should be subconscious. Also, my uvula deviates one way, my tongue the other. (I tell myself if these were signs of true atrophy, and if ALS were the cause - rather than physiological asymmetry - I'd have much more pronounced speech and swallowing problems than I do). But I am so, so scared. Too scared to go to the doctor. I think about this 24/7. It is ruining my life. I struggle to eat and sleep. Four months I have been living like this. If it were ALS, wouldn't my symptoms be less vague by now? Or could this be the very early symptoms, symptoms that perhaps a less anxious person would overlook until more debilitating symptoms began?
  19. Hi, For the past week or two I have felt a strange feeling in the right side of my neck and right cheek. The feeling is not exactly a numbness, and my senses are just fine; it might be more apt to describe it as a weakness, or the feeling that the muscles aren't working. It feels as though the right side of my neck is not helping to hold my head up. I have been palpating the region thoroughly and doing many physical strength tests, and while I have found some vague asymmetries, I have been unable to find a direction in which I cannot move my head/neck. It also feels as though when I swallow/breathe, air/food/water only pass down the left side of my neck. A feeling of lightheadedness also follows suit when I straighten my head completely, leading me to believe that this muscular weakness is somehow constricting one of my corroded arteries. I saw a neurologist about a week ago now who said that I had no symptoms of clinical significance, however, I feel that my symptoms since then have changed, at that his exam was not thorough enough in the region of my body I am most concerned by. My GP saw me as well, and I did describe my symptoms adequately to him, however, he is a GP for 19-30 year olds, and has subsequently never encountered ALS or many neurological conditions at all given that most of them rise in frequency with age, so I am inclined to suspicion. I am a 19 year old male, and am extremely concerned about my health at the moment, it's destroying my ability to function in school and at home, if anyone can offer any help at all, I would be extremely grateful. Thanks
  20. So I've had body wide twitching, convinced myself I had ALS or PD. I would sometimes twitch between my thumb and forefinger. But it woudl be every few minutes. Today it is like a heartbeat between my thumb and forefinger non-stop. It' not big pulsations but just enogh to see the skin move.It's not painful or stopping me from doing anything but it is somewhat unnverving. Has anyone had non-stop twitching in this area?
  21. Reilly

    new problems

    For the past almost month and a half I've been experiencing pain that radiates from my right next to my hip bone (like from the back not the front) and down into my knee at times. The pain is dull and usually starts when I'm about an hour into a shift at work. I work at a restaurants and I work 30-40 hours a week and I usually don't get a break during shifts. Sometimes the pain will just randomly start up while I'm relaxing at home and it almost feels like a growing pain, and other times when I get up to walk on it, it feels like jello. You would also think that I would be experiencing this in the other leg as well. Pain is a normal thing in most peoples lives but I'm only 18 and I didn't have any problems until recently and I've worked at this same place for over 2 years. My mind wonders to things like bone caner or MS or maybe even ALS. It shouldn't be normal for someone my age to be experiencing pain on a daily basis.
  22. DeannaW

    At It Again

    Well, I'm at it again, unfortunately. My hands have been puffy on and off for the last couple of months, and on top of that, I started having this really weird taste in my mouth about two weeks ago. Made the mistake of googling the metal taste in my mouth and finding out it's possibly related to either kidney failure, a heart problem, or Parkinson's. Or, you know, acid reflux, which my doctor thinks is the cause and which I'm taking medication for now. She doesn't think it's my heart or kidneys, which is nice, but now my muscles feel weak, like someone's drained my battery or something. She thinks it's because of anxiety, but of course, I think I have anything from a brain tumor to MS to ALS. The only reason I figure it's not Parkinson's is because I haven't heard of many people in their 30s getting that. My arms and legs seriously feel so heavy and floppy though, like they're about to poop out and stop working. I did go to the gym Wednesday and was still able to work out at my normal intensity, so that's good, but my body just feels so tired. I know it can be caused by anxiety, but it would be much easier for me to believe there wasn't something horribly wrong with me if I felt better. :-( I find myself overanalyzing every move I make to see if it feels harder than it should, and of course it does.
  23. Hi All, Warning: this may be long I'm new to the website, certainly not new to health anxiety (I'm a 20 year 'survivor'). I have gotten through a MS fear in my 20's, which cost me several years of enjoying life. I was fully functional, just constantly fearful and symptomatic during that time. I found medication helped with the anxiety but not the physical sensations. I had a blissful 10 year hiatus from HA during my 30's, then by brother in law got esophageal cancer. I was having mild heatburn at the time, and it ballooned to a full bore panic about my having EC (2011). I had testing done, and all was good. It took about six months to get over that and I was back on my medication unfortunately (effexor). Fast forward to February of last year thereabouts, I was feeling a little off, some myoclonic jerks happening while I was sitting at work and stuff like that, then the twitching started around the second week of February. Within a few weeks what started in my calves spread and I was, thanks to Google, back in full panic mode on an ALS tear. Now, I'm an old hand at HA, I've got this right? I went like four years with unexplained symptoms in my 20's... I got this! So I thought. The reality is, this time, I cannot shake it. Not at all. I've changed medications due to the side effects. But the twitching, the pain and now the cramping continue. I'm on the BFS group on Facebook and that has been very helpful but it doesn't completely do the trick. I can't medicate the anxiety away (nor do I want to) and like my 20's, these physical symptoms appear out of nowhere and really don't seem to have any correllation to being stressed or not which, just like back then, is keeping my HA mind fixated on having this horrible disease. I've had counselling before, and CBT has been recommended. I've half heartedly tried it with the thought record, but always thought... I don't see the point of this. I'd like to know people's experiences with CBT. I'm going to restart the thought record (I just did one for a back spasm I had this morning) and go from there. Thanks, Chris
  24. Hi! I'm Seb! 22 y/o who has a has a whole slew of anxiety - although the thing that has been unfortunately reared its ugly head is my fear of ALS. Just a little bit of background, I'm not new to hypochondria, I've had it for about 3-4 years now and when it sprang up I visited other sites, such as the now closed AnxietyZone to try and get help, which I did, and meeting people who had the same fears and worries that I did helped me a great deal and in fact was the push that I needed to get my fears under control for about a year and a half. Sadly though, I've found myself falling back into some old fears, and I have been struggling with trying to deal with it alone. This all started about a week ago - when I started to experience a whole slew of twitching across my ribs, mainly one spot in particular just underneath my arm. Now I've been twitching for years and while I've never actually seen a doctor about it - I've been fairly sure that I have BFS as nothing has ever really come of any of the twitching and they tend to bounce from place to place with hotspots every so often (I've even had a hotspot on my tongue for a few weeks!) I was content to ignore it when I got a nasty cramp across the left side of my neck and shoulder in the wee hours of the morning, which .. I tried not to think to much about - until my brain oh so helpfully reminded me that while rare, A** can manifest starting across the shoulder and back. So for the past few days it seems like my left shoulder is tense and I can feel the muscles and every little twinge or twitch so much more acutely that it has driven me bonkers. I've done everything that I can to try to not feed my fears and worries, such as keeping myself preoccupied and not looking to Mr.Google for answers (which sadly doesn't help so much when you've already read the information in the past). The only thing I haven't done is actually gone to a doctor about this, which unfortunately I cannot do. It is frustrating because I know looking at it from a purely logical standpoint - that the chances of it being what I fear as so astronomically low that I probably have a better shot at winning the lottery, and I repeat this to myself, but I struggle to chase the fear away and I'm very angry at myself to find that I've fallen so far back, when I'd made so much progress with my anxiety (at least with my hypochondria.) Any and all advice would be appreciated, thank you for your time.
  25. Theo

    GAD, HA & Fear of ALS

    Hey everyone, I've lurked here for a bit and have found the site very helpful. Unfortunately I cannot quite shake that I only have GAD and I'm waiting on symptoms to get worse (classic hallmark of HA, I know). My GAD is usually brought on by a trigger, and in this case my wife and I were on a road-trip to Florida a couple of weeks ago. While in Florida, there was a snowstorm back where we're from and I noticed a family was killed by a semi that lost control. I projected this on to the drive home we had to make and was certain something was going to happen to us. Contained my anxiety over it inside for our last couple days in Florida. It didn't and we made it home safe, albeit after an 18 hour drive in the car. Fast forward to after we're home and I've got a pinching feeling around my upper bicep (which I construed as weakness, but it really wasn't) and several pressure points around my armpit area. Around the same time, I noticed the sister of an old college friend is in the final stages of ALS. One thing leads to another and I'm projecting my construed weakness in my arm to the fact that weakness is a symptom of ALS. My arm was never weak, I went to the chiro a couple of times, got adjusted and did some exercises to work out the tightness and it's fine. In the meantime, I still haven't been able to shake the notion that ALS is somehow in my future. I went to my GP and within 15 minutes she has me diagnosed with GAD. This is something I've known I likely had deep down for a while. I had acute anxiety in college about 12 years ago, but that went away and I've had small bouts here and there since then. Anyways, my GP put me on 10mg of Lexapro and re-upped a previous prescription for Klonopin as needed. In the time since my GP visit earlier this week, I've focused in on a left calf pain I've had after walking (mostly occurs when wearing dress shoes for work and outside in the winter cold) and how the pain had started to increase. Yesterday it started to move in to my hamstring a bit after I was sitting at work for a long period. The pain is really more of a discomfort, it doesn't impact my walking, movement, muscles, and isn't a cramp. Feels more like a light strain almost but I haven't been very good about working out lately so that had me a bit perplexed. The thing that gets me is, when I'm sitting and even moreso laying down, my calves (slightly more left than right) are twitching more prominently than I remember. The twitches are visible, and move around my calves. Sometimes I'll get a one off twitch in a thigh or arm but nothing consistent there. Now, I'm a 30 year old male, with no weakness, a fairly decent diet, don't smoke, and no real other risk factors for ALS. I can't seem to shake the thought that these twitches in my calves are going to turn in to foot drop, or my calf pain will turn in to cramps or any other indicator of ALS. I've read conflicting information where sometimes twitches (fasciculations) can sometimes come before weakness but it's rare and other places that state fairly matter of factly that weakness (in limb onset) is the presenting sign. I'm driving myself nuts with the anticipation that I may have ALS and might just not know it yet --- essentially putting the "What if" scenario through my head. I know this is GAD logically and that stress combined with the fact that I've had a higher propensity to twitch before (not all the time) is likely building up the adrenaline in me and the twitching is releasing it that way. I just can't shake the fear of waking up tomorrow or the next day etc.. with real actual weakness and a seeming death sentence. Any guidance on the twitching due to either calf pain/lower than normal exercise level/dress shoes/stress would be great. T