I have to risk it. Weekends without alcohol is not enjoyable for me, with or without pfs.
Fuck I hate that. Can’t even sit properly without feeling like shit. I hope there is a way to recover from it. I developed this side this year in march.
I can cope with muscle dystrophy of other parts of my body, but not with the throat muscles involved in swallowing. I am coughing my eyes out hundreds of times a day every day as I keep aspirating food, liquids, and saliva. Deep violent thrashing coughs that put me on all fours as I wake up the whole block. Every swallow puts me on alert. Am I going to aspirate this next amount of saliva again?
You think muscle dystrophy is bad until it happens to something as vital as your throat muscles. It’s unfathomable and suicide inducing. And I am all alone.
What caused this was an NAD+ supplement.
Wish I were concerned about how I am going to put mass on my pecs instead.
I had the same problem with feeling my bones on every surface I was sitting on for the first couple of months including getting pins and needles in my legs really easy. It eventually goes away, at least for me it did.
Though I do have a bundle of muscles on my butt that still feels dead and painful to this day after a couple of years
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Is the musle loss in your throat diagnosed? Maybe you ‚just’ loss your reflex to swallow properly.
I don’t think if it will get better for me. I developed this one after almost 3 years of pfs.
The strange thing is, that I can lay now on my side in my bed without getting pain. A few weeks ago I just could sleep on my back.
Maybe. I hope you’re right. Will be waiting months to get an instrumental test of what’s going on when I swallow.
What’s really concerning for me is that I will be getting jaw surgery for sleep apnea eventually. Being under general anesthesia for so long might have dramatic consequences for me.
At least you can sleep on your side now. Maybe improvements can just come out of nowhere when you stick to a healthy routine. I agree with others who are telling you to be mindful about your drinking. I think I’ve read that alcohol has caused a number of people to crash. Maybe there are safer ways to unwind. At least be moderate. Look up alcohol and muscle androgen receptors.
What makes you concerned about general anesthesia man?
Who knows what large amounts of general anesthetic drugs might do to AR expression. Muscle dystrophy happened to my swallowing muscles. What if I wake up from surgery constantly aspirating on my own blood.
Admittedly it’s not a huge sample size but other patients have been under general anesthesia and not suffered any lasting effects. Fingers crossed you’ll be fine.
No issues for me during my procedure. I did however wake up mid procedure but it in a “Saw movie like” daze. No pain, no nothing. Just suddenly awake for a brief minute.
Good to hear mate. Bet it was a strange experience though lmao.
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Sure was man. Everything was in blobs and oddly out of place. One of the strangest experiences in my life but wasn’t scary at all.
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I got generalized weakness almost instantly (within a few days), by 6 months, I had lost 10-15 lbs of muscle, and it continued for over a year and a half with skin changes, body hair changes, derealization, etc. 3 years after taking Finasteride and I can’t build muscle or lose fat. Body doesn’t respond to exercise. You got lucky.
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Same symptoms mean, my muscles feel like they’re turning to mush, also joint issues. This is absolutely insane, I got it after one .25 dose.
Man*
Can definitely relate here. Twitching was non-stop at start. Now comes and goes, but when it’s there, it’s scary. You can see the muscles twitching in a mirror.
Yeah it comes and goes now it’s not constant, but no one fucking believes me when I went to the rheumatologist obviously it wasn’t acting up then and she was like “I don’t see/feel anything and you’re bloodtests don’t show anything you’re fine”.
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Ditto. I know your pain all too well. I swear it’s like taking the car in. It was making this clunking noise earlier. Only difference was it was my first Neuromuscular doctor, seeing a Rheumatologist next.
How is your breathing problem? Is it getting better or worse? Can you describe it?Thank u！
I can relate to the loss of muscle. It’s scary the muscle throbs, shrivels and disappears. He doesn’t stop
I’m sorry if it doesn’t come across well because I translated it using AI.
I get asked questions from time to time, and I apologize for the delay in responding.
As long as I’m not writing here, you can think that my physical condition is still bad and hasn’t changed. Unfortunately it won’t improve.
This time, the situation got even worse, so I came here to write.
The skin of my penis has started to change. And my penis is getting smaller.
I’ve been on PFS for almost 10 years now, and it still seems like it’s going to get worse.
Sorry for all the negative posts.
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