It is . But he’s going through some serious stuff that in reality has the potential to be something bad . But ALS has a very certain consistent path . and it’s either that or it’s not .
From someone who stayed up for six weeks with zero sleep this is comforting. Obviously I was faced with a chance of the worst outcome
Difficulties when swallowing can point to literally thousands different conditions, most of which are either minor or benignant.
Damn, even anxiety can do that to you.
LOL I’m not taking about difficulty swallowing
The dude lists all these crippling sides he’s experiencing. ALS stops you from swallowing . I know someone with it right now. She was diagnosed with it 8 months ago and she stopped swallowing last month. She’s on a feeding tube.
Is the only symptom on this list you could ever associate with ALS.
“my right arm appears to be severely weakened as if there’s nerve damage that seems to be making it’s way down to my feet, slurring in my speech and finding it hard to talk, it’s as if I’m not getting enough oxygen into my brain and suffocating from within”
The person I know dying of ALS right now has all these sides . Hers started with slurring of speech as a lot of cases . I’m not saying this guy has it. He probable does not and will know soon if he does.
Ok, I’ve just learned that slurring speech is the non diagnostic espression for dysarthria
By the way, I’m out.
Night guys.
I’ll say a prayer for you . Hope you snap out of it and it’s not the worst of the worst
There is one report of a PFS sufferer coming down with Parkinson’s. The guys wife reported it . I believe he was in his 50’s or late 40’s maybe ? Can’t find the thread
One thing to consider though is that there are not that many late forties early 50’s members on here. And I’m guessing that if these PFS sides are some kind of “early onset” ALS or Parkinson’s in my opinion we still wouldn’t actually get ALS or Parkinson’s probably until a while from now. This would just be kinda like awakening the beast type of thing . But the damage to the neurons for it to be full blown ALS or Parkinson’s probable would still take a while
@5-alpha-victim Well, a guy I used to work with messaged me 2 years ago to say he was sorry to hear about my deterioration and that he’d also took fin but stopped after it made him feel unwell. Thankfully he recovered. He’s recently been diagnosed with Parkinson’s. I havent mentioned the link to him.
I feel so desperate 
ME too - but who are you. Where you from? Tell US something. So do you have symptomes related to @Papasmurf
I’m relativ new with the pfs symptoms. But starting muscle loss, numbnes in arms and legs, social phobic, depressed and no drive get out of the bed, without self dictatorship to buy the basics, make a little swim or walk, I would be bedbound by no motivation for anything.
Being vegetable! No more Lust for live.
I am only 22 years old and I come from China.After more than half a year of PFS, my testicles shrank, my muscles twitched, my limbs became weak and my limbs became numb easily.I’m worried that I might get ALS in the future
The same as me. But I have mitochondrial Myelitis
Because the Reductase Inhibitor and the DHT lag damages the mitochondria in the musclecells too.
ALS ist mostly the diasease of elder men.
@swq5803000 many recover with time but they feel they are going to be in this permanently and catastrophasize “a Pfs trait” give it time and be good to yourself, keep hope and stay away from 5 ars. PFS has been around for 20 years so we can expect ALS is quite rare. We’re not aware of anyone developing it as yet.
In the past few months I have mainly been checking on sexual function, but I haven’t had a full check on the muscles.I want to know how to diagnose mitochondrial myelitis
For the young guys it is totally brutal to feel ED und being damaged for the rest of their lives. But from the German Subgroup and from some cases here I know, some can live an acceptable live with pfs
If they don’t have severe symptomes. For the severe cases it is very hard to live with this for decades. Maybe total bedbound and weak. This is WE all afraid of.
Real fun with pfs is impossible. Cauz fun, sex, doing something all is chemical and our neurochemical state ist damaged.
One of the things I read was that people with mild symptoms tend to recover, but people with PFS who have muscle problems tend to keep their symptoms and even get worse.Do you know anyone who has recovered from muscle problems
@swq5803000 yes two guys who were suicidal around the clock because of it. Both recovered, one after 6 months the other after 1 year. Both have moved on with their lives.
Dear @LazarusRy - They both had muscle wastage for a period and than they recoverd. Please connect us with their synonums / usernames
That would give me and @swq5803000 some hope!
They’ve gone I can’t remember their usernames as had a lot of contact outside of the forum. I know another guy who also suffered facial changes as well as muscle loss. He recovered two years on. They all had multiple symptoms.
I believe what makes this permanent or worse for many is repeated use “me” or taking something to improve symptoms after stopping that causes another crash.
Rhabdomyolysis, mitochondrial Myelitis, ALS, there are so many damages connected to PSF, that we only have to hope, that we are mild cases and recover once or that our symptomes stabilize at a baseline.