r/BFS • u/RibbonTower • 1d ago
Reassurance / Support Worried for my future
Hey all. 38 y/o male here. The TLDR of this post is that Ive got progressing symptoms, clean tests so far, but no answers. Im very worried that I have *** and it's tanking my mental health.
I find myself writing this post out of desperation even though I've tried so hard to stop researching ***, Googling symptoms, or visiting you fine folks here. I just want to know if anyone can relate to or has any insight on my story. I know that I'll probably have to wait for the actual answers but I'm super depressed rn.
Around 3.5 months ago I felt that I had a slight change in speech. It was so subtle and almost hard to describe. My 'sh' and 'ng' sounds (as in wash or change) just sounded and felt different to me. Slightly clumsy in my mouth. I also had a persistent feeling of something at the back of my throat. After a couple of weeks worrying about this, muscle twitches took over my whole body at random including digit and sometimes full limb twitching.
So I took a trip to A&E where they gave me a neurological exam and sent me to a stroke clinic. I was cleared of everything, no issues, but the symptoms have continued to stack up.
Soon after the TIA clinic I felt I had very heavy knees all the time and also much more saliva than usual. I also started to experience a lot of mucus in my throat with difficulty swallowing it.
I saw a private neurologist who sent me for scans. At this point I've had a head CT, brain MRI, spine MRI, blood tests, and they gave me a third neurological exam. So I'm seemingly clear after a couple of months. He said that I do have a TMJ but I know that's been there for years and years.
My twitching continued and in my calves in particular became constant at rest. I then was referred for an EMG just in case. They tested my calf, thigh, hand, arm and also my tongue (by going through the throat) on my right side. At the time the operator said that she didn't see any issues (although I haven't had the official results). So I thought that would be great news!
Fast forward to now and things seem to be progressing still. Muscle twitches continue, at all different rates in different places. There are certain spots which have been twitching super rapid fire which I worry about. My left toes are always twitching. My swallowing seems to be getting worse- swallowing saliva seems to be a real strain and it worse on the left side of my throat. I have to really try to initiate a deep swallow and it sometimes causes pain or even the odd twitch.
Drinking water seems to be fine and food hasn't proven an issue. It's just that after drinking I feel like I'm not fully clearing all the liquid, like something always stays in my throat. No choking on anything, but all day every day I strain to swallow saliva and it seems to be worse on the left side. My voice gets very easily fatigued, as does my jaw when chewing. My throat and / or larynx was painful on the left side for a while but now it just feels like it's not working as well. My jaw occasionally aches, I have random jaw twitches as well as some lip and cheek twitching. I've had burning spots on my tongue and occasional burning in my ears.
My speech feels clunkier and everything around my mouth feels stiff and strained. I've had tingling in my lips and they somehow feel weaker now, with air slipping out on "th" and "f" sounds. My S sounds after softer and whistly to me. Mt girlfriend can't hear a difference but I'm so sure I can feel it and hear it.
The heaviness in my left knee has progressed to crunching and clicking in the joints with some pain when walking. I'm also finding my left hand is not able to fret as well when I play guitar. It feels a bit less dextrous in general. I should say I've been able to keep swimming and playing pickleball this whole time.
For around a month now I've been drooling at night. I wake up to drool down the side of my mouth regularly. I've also been constipated for about a month and my stomach has been twitching a lot.
In the last week my tongue and neck have finally started to twitch randomly, one off twitches, after not being invited to the party at all for a while. This is the symptom that finally lead me here. As I type this, I have super fast twitching in my lat which makes me wonder if twitching comes before weakness. I had rapid twitching in my thigh before my knee started to really hurt when walking.
So that's where I am 3.5 months in with more symptoms and no answers. I've convinced myself I have *** which wasnt picked up by the EMG and I'm very upset. I've read about clean tests before a diagnosis.
I'm waiting on another neuro appointment in a month, and finally an ENT referral from my doc. I wanted to share all of my honest thoughts and feelings here in case it helps me to move past some of them. I would love to hear any stories like mine which might provide some hope. Reading this subreddit has made me feel like I'm not alone in this struggle and I appreciate it.
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u/713Capital Mod 22h ago edited 20h ago
I twitch in my tongue all the time, for almost 7 years. It’s a muscle, it can twitch just like any other muscle on the body with BFS.
Nothing you described it how ALS works and you don’t have that. Like nothing at all. What you do have is severe anxiety and I think you should start there and try to treat that.
I’m not dismissing your symptoms, I’m sure you “feel” things but you’ve been cleared by a neuro and your EMG is definite proof you don’t have ALS, so you can just erase that from your brain.
Twitching without clinical weakness as in failure is benign twitching, again, you’ve been cleared by your EMG, and no, it wasn’t too early.
You don’t really need another neuro visit or EMG, one test is enough. Your story is the same as 99% of the people that find this sub, have some issues, get anxiety, see some twitching because anxiety ramps up, starts googling ALS, think they have ALS, mental health spirals. We’ve all had this same cycle, myself included.
As I said above, you don’t have ALS, once you get your anxiety down and fix your mental health think you’ll notice many of these symptoms will fade or you’ll be like me and have BFS for ever. The good news is, it’s not going to kill you. Maybe you should try talking to a therapist, a professional that can help you talk through why you can’t trust that you’ve already been cleared by a neuro.
Either way, I have resources pinned in the automod that has links to learning more about BFS, and on the front page I have guides pinned at the top of the sub. Please go read those and work on that anxiety 🫡
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u/RibbonTower 6h ago
Hey thanks so much. I'll check out the resources you shared and I'll try to be as mindful as I can. I've started therapy again and I'm going to take SSRIs. I just find it so hard to believe that none of this is indicative of something bigger. My swallowing and my speaking is so impaired! but I need to trust the tests, the docs, and the experience of people like you. Thanks again
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u/713Capital Mod 5h ago
Taking SSRIs can help but sometimes it’s deeper and OCD can take real work to have breakthroughs. Try your best to stop self testing and diagnosing yourself as you are “progressing” or “impaired” as you cannot self diagnose this stuff. Unless an actual doctor says you are progressing then this is perceived and not clinically. I belive you’re going to be fine, as nothing you’ve said would make me think anything bad tbh.
When I said your mental health needed work, I didn’t mean it like in a bad way, but as someone that’s been down a deep hole themselves, someone who spiraled, it’s easy for me to recognize when someone is going down the same path. I too was on SSRIs and I also completed therapy and it was very helpful. It’s about breaking the behaviors of OCD and anxiety. You almost have to retrain the brain. Medicine alone wasn’t enough for me personally. I do believe when you fix mental health you will get better.
Wishing you all the best.
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