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I am new to this forum and I am in your exact boat. I have been worried about ALS for 6 months ever since I had a brother in law diagnosed with it and started having twitches. I posted my story in my intro here. Today was my neurological appointment, and the Dr told me I was the 4th person this week that had presented with severe twitching all over the body and not a single one had ALS. She gave me a complete neurological exam and was told I passed with flying colors. I could have an MRI if I needed for peace of mind but in her professional opinion it was not necessary. She then told me I had something I had never heard of and explained my symptoms (muscle twitching, perceived weakness, trouble finding words (not slurring), fatigue, numbness, etc). Functional Neurological Disorder/Disease - FND. Often brought on by trauma, chronic stress/anxiety, panic attach, or even infection. In short, it is when you have no problem with the hardware in your brain (no tumor, cancer, stroke or structural disease such as MS or ALS) but there is a software problem in the way the brain is sending signals. I have scanned the document I was given below and the website it references. I did a search on this forum and only found 2 posts under FND so not sure how often it is mentioned or known. The big thing is it gave me a real explanation for my symptoms and something to believe in other than all the worse case scenarios I had been imagining in my head. It explains why the twitches don't stop even when I feel calm and why the jerkiness and trouble walking are not just in my head. And the great news is it is very reversible with therapies and other treatment. I encourage research on this and even googling it (yes, finally something positive to google). Having this knowledge helped my symptoms immediately. I hope this helps. Links to the websites in the document: http://www.neurosymptoms.org and http://www.fndhope.org
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First, let me say thank you for the many members on this forum and their willingness to share information. It has helped me stay "grounded" through my health anxiety struggles the last 6 months. Brief history - Had an SVT (super fast heart beat) back in July18 that kicked off my first genuine panick attack and a series of stress related health issues (or so I believe). Although the Dr. said that sometimes they just happen and my heart was fine (normal EKG) I freaked out about all the sensations in my chest I felt for many weeks following and looking back realize I have been in a constant state of high alert ever since. Then camping with my family on Labor Day, I felt a vibration sensation going down my neck and internal tremors throughout my body. They were mostly noticeable when I was at rest and varied in intensity. In the middle of the night in my RV, good old Dr. Google made me 100% certain that I had MS and I had my second panic attack. Completely ruined the rest of the weekend as I was paralyzed from fear. A visit from my general practitioner the following Tuesday came the diagnosis of anxiety and the prescription of Zoloft. I struggled with the tremors and getting a good nights rest for several months. As the year ended, I actually started to calm down a little and decided to drop the Zoloft as I did not like the side effects. Then came the terrible news that my Brother-In-Law had been diagnosed with ALS. As I set up a Go Fund Me for him and learned of the circumstances he would be facing, I felt my anxiety coming back on. And low and behold, my tremors turned into muscle twitches, I noticed I seemed more clumsy and dropping things and my muscles seemed tired and fatigued all the time (even though I was capable of doing all the normal activities, yard work, cooking, cleaning, etc). This led to multiple visits to multiple doctors (the first one had to be wrong, right?) all of whom stated it was anxiety. In February, as my muscle twitches were still ongoing, a return trip to my new primary care gave me a referral to a neurologist. She didn't know what was causing my twitches for certain (although she still believed anxiety) but wanted to give me peace of mind. She also started me on Wellbutrin to help calm the nerves. The neuro didn't have openings UNTIL MAY!! Instead of peace of mind, now I had several months to worry about the appointment and what I was just certain was the true cause of my twitching. I also started seeing a counselor, who taught me coping techniques such as breathing and grounding. She also told me to stay off google or to google twitches AND anxiety since anxiety was the only thing I had truly been diagnosed with. That google search led me to countless YouTube videos along with this forum. A place filled with people who shared my story, in many cases almost to the letter. I got a call today that they had a cancellation and asked me to move my neuro appointment up to this Wednesday, 3/27. Even though I am much better now thanks to medication, therapy and the stories on this forum, I am obviously still nervous that I will be that person that was misdiagnosed with anxiety instead of the very rare, terrible neurological disorder that so many people with health anxiety fear. I mean, that's what anxiety does. 100 arrows pointing one way and we only pay attention to the one going the other. I will know more on Wednesday but this forum has helped and will help to get me through until then. Thanks to all that share and I hope I will soon be able to help as well as someone who overcame what was only a fear.
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- healthanxiety
- als
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Hi guys i am a 20 yr old male and for the past 2 weeks I have had twitching throughout my body first it started in my eyelid and now it happens throughout my body randomly in different places any place in my body such as shoulder back butt forearm practically anywhere . I keep worrying that it is either als or some type of terrible disorder. I defiantly have health anxiety and worry about any little thing. I just am worried about this and I feel that posting on here and hearing others will help me tremendously. My twitches happen at random even at times when my anxiety flares up I do not notice them more than usual. They also can happen at anytime anywhere even if I’m not anxious nor thinking about them. Also when I go to look at them typically they are not there nor twitching only have seen my eye and leg and shoulder do it very few times. That’s how fast they come and go. They are 1-3 second twitches every time and only in my eyelid persist more than that or they’ll twitch for 1-3 seconds on and off for a couple of minutes . I’m very active I ran a mile today and did 100 push-ups and sits up yesterday and the day before that. I just am worried it is something worse and that it is not yet progressed because it’s only been 2 weeks. Please help
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- twitches
- health anxiety
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So I have been dealing with twitches for a long time. Over a year. I have gone through hell with the anxiety they cause. I have been away from the forums trying to recover and move on. I have been doing great. My anxiety was way way down and I twitches less too. However, today I have been twitching in two places at the same time in my arm. On my shoulder and by my elbow. It’s been going all day. I can feel the fear creeping back in. I guess because it’s two twitches at the same time.
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Do you also have the feeling of disappointment when your symptoms are better one day, and come back the another? It is so annoying for me! When my symptom is better , I am happier and when it is back again, I am in panic again that maybe it is not anxiety but disease? I am so tired of this Do you have symptoms when you are calm and think you are not anxious? When I feel better and get my symptoms, I am worried again and again.
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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.
- 4 replies
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- als
- hypocondria
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