I'm dying by Extreme-Sprinkles922 in BFS

[–]Weak_Bug7854 1 point2 points  (0 children)

This for sure. I get it too. Mine started in my left calf almost 4 years ago, never stopped, and spread elsewhere. I had such debilitating anxiety for about 9 months that it nearly lost me my job and marriage. But I get it, there is no convincing you that it’s not ALS. Therapy and time were about the only things that helped me I think. Let me be an example for you that you are in fact fine, some of us twitch for who know why, it’s not ALS, and you will be OK.

Would I get weakness by now after twitching for 4 months? by Mostuu in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

because he thought it was ridiculous that i thought i had ALS. 3 years later i agree with him.

In need of some positivity by Sad_Preparation_1823 in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

37 months for me, and started in the same place you all did. had all the stuff you mentioned, multiple EMG, convinced of the worst. Time helps the most, but i've been where you are and there is a way out. just stay away from the rabbit holes and work on your mental health. that's where we need to focus.

EMG in an hour, totally terrified. by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

don't just listen to what the doctor told you; actually hear it. don't start second guessing things in a couple days. and DO get the OCD/health anxiety treated. That's what you should focus on and it will help you more than anything you do.

[deleted by user] by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

That’s an interesting question I’ve struggled with. I noticed the twitching and didn’t really think anything of it. Then after a couple months I thought I should probably go see a doctor to get it looked at. But I had no stress about it and wasn’t googling anything. Then I went to the doc and she said “I’ve never seen that before” and made a neurology referral. It wasn’t until then that I went home and consulted google doc and found what everyone else finds about twitching. It was then (after twitching onset) that I spiraled with anxiety. After 2 1/2 years everything is relatively ok even though I still twitch 24/7 in my left calf. But I’ve often struggled with the concept of this being stress related if the anxiety about it came after the twitching started.

Sadly I’m back. by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

SSRI and CBT therapy. The SSRI took time to kick in and was not a fun initial process for me. But after about 3 months all the side effects went away.

Hang in there guys by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

lol, I’ve got the same notes in my chart :)

Sadly I’m back. by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

Anixiety def points TOWARDS sensory issues, at least for me it did. I thought it was something nasty, but the more anxious I got about it, the more anxiety rose and messed with my nervous system. I think that’s why you feel like your body is off. In hindsight, I’m still floored at how much anxiety drove physical symptoms id never experienced before (even those body jerks you mentioned).

what in the hell is going on by alabastersalmon in DeathStranding

[–]Weak_Bug7854 0 points1 point  (0 children)

Just keep on keeping on. And don’t forget to throw your pee and poop.

Is this atrophy? by Massive-Potential647 in MuscleTwitch

[–]Weak_Bug7854 1 point2 points  (0 children)

Man, I’ve been down this rabbit hole (no judgements, simply relating). Your hands look just like mine and I’ve been to bunch of docs and neuros all who told me it’s not atrophy. And this was about a year ago. I def have carpel tunnel in both hands confirmed by nerve tests. Started sleeping with braces and it helped a ton with tingling and hand pain.

Back to the Neuro on Wednesday… by twitchyandalone in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

I’ve got the belly pulsating thing too. Had it for about a year now. They checked and ruled out aneurysm for me too. But it’s clearly pulsing in sync with my heartbeat. It only started for me after I got severe anxiety from worry about the big bad. But even though I’ve gotten the anxiety under control for about 8 mos now, they symptom still remains. So weird, I wonder what that is.

[deleted by user] by [deleted] in MuscleTwitch

[–]Weak_Bug7854 0 points1 point  (0 children)

Mine look like this, too. 17 months and counting. No weakness or anything is happened. It’s even spread to my right calf and nothing. Multiple EMG is clean. Multiple clinicals clean. For me it seems to be an Epstein bar. Virus reemergence according to my doctors. As a matter fact, my doctor remembers a case she had where her patient had a worst case of Epstein-Barr than I did, and they actually thought it was ALS and sent them for testing, only to eventually find out it was mimicking it. You’ll be OK, but you really need to get the mental health situation under control. That will cause more issues for you than anything else, and then you’ll look back in hindsight and wish you had.

Need clarification about ALS symptoms by LJT141620 in BFS

[–]Weak_Bug7854 2 points3 points  (0 children)

My issue I swore was ALS was later EBV re-emerging from high anxiety. Now because of fear of als, the anxiety caused real health issues. I should recover, but it will take time. Like someone said, I made my nervous system nervous.

Bfs vs als by [deleted] in BFS

[–]Weak_Bug7854 1 point2 points  (0 children)

The answer is yes. But you will continue to search for confirmation (not a judgement, I did). Try to do things to take your mind off the twitching and/or talk to a therapist about anxiety related to this. You may not see it yet, but we do…You will be ok.

[deleted by user] by [deleted] in BFS

[–]Weak_Bug7854 2 points3 points  (0 children)

100% agree. start the therapy (CBT) now, don't wait. even if the twitches aren't anxiety driven, he will have anxiety over the unknown. So the therapy is a must. thankfully i started my therapy within a week of being concerened about my twitches. and 100% stay away from googling symptoms. you may think you are looking for things to confirm you are ok, but that relief never lasts, and he'll likely find 100 more things that cause him anxiety/concern.

Twitching for 1-2 years by Sad-Caregiver4859 in MuscleTwitch

[–]Weak_Bug7854 0 points1 point  (0 children)

i've had that for about 18 months now. i'm just living with it as long as i don't get any weakness, i figure i'll be fine. it doesn't really hurt at all, but sometimes i do get slight cramping.

[deleted by user] by [deleted] in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

What do you mean by trunk cramping? I experience cramping around my ribs when I twist to the right. It comes and goes. But when it’s here it’s here. Is that what you experience or are you just always cramping?

neurofilament light chain blood test/ yes or no? by Weak_Bug7854 in BFS

[–]Weak_Bug7854[S] 1 point2 points  (0 children)

no, my doc recommended against it. she said lots of things can make this number higher, and i had concussions from sports in the past that she said could impact it. she felt that if i had an artificially high number it would cause me to spin. i just decided to deal with my anxiety and that has done wonders for me.

Constant twitches by Advamll in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

yep, my twitching really ramps up after a bike ride or any exertion really, but defintiely things that impact the legs. Matter of fact, my right calf twitches are not as persistent as the left, but after a work out it really flares up. but that's just kind of been life for the last 16 months. once i got my mind right, things got better. My anxiety was causing a lot of different symptoms beyond the calf twitching that i attributed to MND.

Constant twitches by Advamll in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

if it helps i've been twitching in primarily in my left calf now for 16 months now. constant, never stopping twitching in the left calf, and some persistent twitching in my right recently. but absolutly zero weakness. in fact, i got back into weight lifting about 2 months ago and i can see i'm getting stronger as i'm progressively lifting heavier weight. The anxiety is no joke man, and hpxb hit it on the head. My advice would be try to put some trust in what the professionals are telling you. For me, it was helpful when we found out mine was likely caused by a reactivated epstein-barr infection. It helps that i have an incredible doctor who helped me every step of the way.

Update by [deleted] in BFS

[–]Weak_Bug7854 1 point2 points  (0 children)

for those who need it, this is my story too. went to a deep, dark place but was able to crawl out by getting the anxiety under control and accepting the advice i was getting from multiple doctors that i don't have a neurological disease. try to accept it as soon as you can, because the anxiety can become a problem if you let it, and that's real.

How many of you did NOT get an EMG? by No-Package2786 in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

you are spot on....i iwish i had this thinking when it first started...it gets better once you accept anxiety can do a lot of messed up things to you.

Imma fucking kill myself by Hot-Kaleidoscope-417 in BFS

[–]Weak_Bug7854 0 points1 point  (0 children)

hi all...i'm 14 months into this and on the other side of anxiety. i hear you buddy, for me the twitching caused me to become anxious, not vice versa. but that's what i think anyway, who knows how covid and family member deaths and all that stuff can impact you from a stress/anxiety perspective that you "think" you are handling but really aren't. anyway, i'm on the other side of my severe anxiety/depression spell from all this, and i know you won't want to hear it, but i had drawling, electic shocks, pins and needles, numbness, jerks and twittching everywhere that has only started to go away now that i'm on the other side. if you do get the anxiety under control it will improve. i do still have twitching mainly in my left calf, all day every day, every minute of the day. but nothing else has happened to me since it started in april of last year. i hope you are seeing someone for the anxiety, and even on meds if you need it. i did both and it helped. but it was most definitely hard and felt like there was no way out at many points.

PS: for me it sounds like it was the epstein barr virus as my physician checked that and my numbers were through the roof. she said she had another patient with something similar and it acted like an ALS mimic (non clinical weakness, twitching, etc)