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Forum » Hi boyos, im down, as there is a strong chance i might be around for much longer
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Thread: Hi boyos, im down, as there is a strong chance i might be around for much longer

post 1571403121 01-17-2019, 08:48 AM
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well sorta update, i see the neurologist for a 40 minute consultation but to be honest it hasn't made me feel that much better. He pretty much did a few extra tests and the same stuff my GP did (who didnt cost 250 quid, excluding the blood tests to just see btw), didn't comment on the weird shape and lack of flexibility of my tongue and my stuttering and slurring in my voice. On the plus side, he did send off for some more specific blood tests, one which looks for creatine kinase, which if raised would show muscular deterioration if occurring in my body so. Even so, I dont think i have lost THAT much muscle yet visably, and that wouldnt rule out me having ALS as apparently most of the time the muscles dont actually waste away until you cant really use them at all anymore.
post 1571404181 01-17-2019, 09:00 AM
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Originally Posted By Chargr⏩
Hey OP, I thought I had ALS couple of years ago. Started getting muscle twitches everywhere, loss of balance, speech changes and I thought all was over. After an MRI and CT scan, everything came out negative. Neurologist said it was anxiety. I felt relieved but still thought “maybe he didn’t get the right results or whatever”. Few months later I end up at the hospital because I feel my entire body numbing, and I felt like I was about drop.

I got the same answer. Anxiety. I then decided to live with it. 3 years later, I still get muscle twitches and the other issues I mentioned before. I just suck it up.

I noticed that the More i worry, the more these symptoms flare up. Right now I have strong brain fog, which makes things somewhat difficult. However, I’m beginning to train my mind to be positive in everything. The mind is strong and you got to get control of it. Don’t let anxiety win.

Good luck OP, I’ll pray that you come out ahead.

Also don’t you dare look up online your symptoms OP, I did that and it just made everything worse. I went downhill for like 2-3 months.
Not gunna lie, looking up my symptoms havent made me feel great. but the fact im not exactly getting better day by day and with the wait between seeing doctors and tests makes it tempting.
post 1571404191 01-17-2019, 09:00 AM
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Originally Posted By Chargr⏩
Hey OP, I thought I had ALS couple of years ago. Started getting muscle twitches everywhere, loss of balance, speech changes and I thought all was over. After an MRI and CT scan, everything came out negative. Neurologist said it was anxiety. I felt relieved but still thought “maybe he didn’t get the right results or whatever”. Few months later I end up at the hospital because I feel my entire body numbing, and I felt like I was about drop.

I got the same answer. Anxiety. I then decided to live with it. 3 years later, I still get muscle twitches and the other issues I mentioned before. I just suck it up.

I noticed that the More i worry, the more these symptoms flare up. Right now I have strong brain fog, which makes things somewhat difficult. However, I’m beginning to train my mind to be positive in everything. The mind is strong and you got to get control of it. Don’t let anxiety win.

Good luck OP, I’ll pray that you come out ahead.

Also don’t you dare look up online your symptoms OP, I did that and it just made everything worse. I went downhill for like 2-3 months.
15 years ago when I was 20 I started shaking, muscle spasms all over body, feeling weak, etc... I googled and was determined I had ALS. Went into depression, anxiety, and was too scared to go to a dr. 2 years later (which I probably would barely be walking at this point if I did have it) I was still twitching nearly 24/7, feeling weak, etc. Finally went to GP and he said I was fine. Went back 6 month later and said I was fine but sending you to a neuro. I went to the Neuro 3 times in 2006 and he never really came up with a conclusion. Was like you pass a neuro exam but he did note that my lactic acid levels weren't rising correctly. Thus causing my arms/body to fatigue doing simple **** like brushing teeth. It wasn't true weakness it was perceived as I'd get tired but could still do it.

Finally gave up on drs after 6 visits and nothing. Total waste of money. I'm 35 now have gotten stronger, gained muscle, but I still twitch and fatigue most of the day every day. Mainly in my calves but my abs and arms were yesterday as well. Twitching honestly doesn't even bother me anymore, but the fatigue is annoying. Basically if a normal person were to hold their hand out in front of them and hold it. I'd get tired in like 30 seconds where it might take them 5 minutes. But once I put it down the lactic acid feeling goes away and I can go for 30 again. I can go 5 minutes if I want it just feels weird and tired.

Anyways I was never really diagnosed as they didn't know. But I joined a forum and later ******** group on benign fasciculation syndrome. Literally all the people in there have my exact symptoms pretty much to the T, all are scared of als or have been, but none of them have it and we all live our lives. Some on there have had it for like 20-30+ years. I'm at 15-16. Basically the final answer is there is nothing that works or you can do. Many of the people on there have been to top dr's at the Mayo clinic etc and found nothing.

Might check it out as it tends to mimic things that might make you think you have ALS, but at 20 its very very very unlikely you do. Als is extremely rare and even much less so in a 20 year old.

The crappy thing with BFS is that you don't die from it, and it doesn't seem to show much on a test. So there really isn't any research or funding so there is not likely to be any cure anytime soon. Unless some random drug developed for something else helps.
post 1571404311 01-17-2019, 09:01 AM
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They tell you how long on the results?
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post 1571451121 01-17-2019, 07:10 PM
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Originally Posted By RedRusty⏩
They tell you how long on the results?
About a week i think, honestly dont see the point as i know they probably wont find anything really. And depending im getting worse by the day i dunno. i mean I woke up today and now my left arm is feeling weaker than the other. got tired holding a plate of food in my hand.
post 1571451321 01-17-2019, 07:13 PM
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Stay strong brother, look up other people in a similar situation. Whether it be on youtube or forums you might find out something interesting or worth finding out. Keep us posted brah, serious.


OR I WILL FIND YOU AND SPLIT YO WIG CUZ.






























srs ******* keep us posted.
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post 1571451561 01-17-2019, 07:17 PM
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Originally Posted By Rad203⏩
well sorta update, i see the neurologist for a 40 minute consultation but to be honest it hasn't made me feel that much better. He pretty much did a few extra tests and the same stuff my GP did (who didnt cost 250 quid, excluding the blood tests to just see btw), didn't comment on the weird shape and lack of flexibility of my tongue and my stuttering and slurring in my voice. On the plus side, he did send off for some more specific blood tests, one which looks for creatine kinase, which if raised would show muscular deterioration if occurring in my body so. Even so, I dont think i have lost THAT much muscle yet visably, and that wouldnt rule out me having ALS as apparently most of the time the muscles dont actually waste away until you cant really use them at all anymore.
I thought that healthcare was free in the UK? What are you talking about with the "250 quid"?










Could be herpes, OP. SRS. I read that sht can cause nerve damage and all types of weird symptoms. Probably just anxiety though.
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post 1571451601 01-17-2019, 07:18 PM
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I'll ride the thread with you op
post 1571453981 01-17-2019, 07:51 PM
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Originally Posted By RonaldMcflurry⏩
I thought that healthcare was free in the UK? What are you talking about with the "250 quid"?










Could be herpes, OP. SRS. I read that sht can cause nerve damage and all types of weird symptoms. Probably just anxiety though.
as i cant wait 2 months to see a specialist so i went private to speed the process up. And depending i havent got laid in a few months i doubt it. Also i dunno how herpes would cause these symptoms.
post 1571454951 01-17-2019, 08:04 PM
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Originally Posted By Rad203⏩
Not gunna lie, looking up my symptoms havent made me feel great. but the fact im not exactly getting better day by day and with the wait between seeing doctors and tests makes it tempting.
When are they giving you the cattle prod?
U
post 1571464781 01-17-2019, 10:37 PM
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Op, everything you describe sounds like ANXIETY. You’ve gone full hypochondriac. Believe me googling symptoms and thinking you have them, your mind will actually start making you have those symptoms.

I’ve been there quite a few times, but getting ALS at 20 years old is frankly unheard of aside from like 1 or 2 cases srs. Your doctors probably think you’re bat chit crazy and wasting healthcare money.

Google symptoms associated with anxiety. Anxiety can make your muscles twitch, tongue twitch, feel like your weak, mess with your speech, etc.
Look, i know i don't really know you and all, and i know you probably hear this like everyday, but your just so perfect to me. The few hours we talked were really great even if the convo was stale, your really pretty and chill, and your country thats just perfect :'D i really dont know how to explain it, but i think i have feelings for you somehow. i never felt like this with someone i just met, but i felt the need to get it off my chest. sorry for being all weird just idk how to explain it D:
post 1571466111 01-17-2019, 11:10 PM
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Originally Posted By awwchit2⏩
Op, everything you describe sounds like ANXIETY. You’ve gone full hypochondriac. Believe me googling symptoms and thinking you have them, your mind will actually start making you have those symptoms.

I’ve been there quite a few times, but getting ALS at 20 years old is frankly unheard of aside from like 1 or 2 cases srs. Your doctors probably think you’re bat chit crazy and wasting healthcare money.

Google symptoms associated with anxiety. Anxiety can make your muscles twitch, tongue twitch, feel like your weak, mess with your speech, etc.
I fully agree with this bro and the others that mention anxiety. Anxiety is a motherfukker and I wouldn't wish it on anyone. Mine started after I had a panic attack 5 years ago and when it hits I feel like I'm not real, my legs have gotten weak before and it can cause me to feel lumps in my throat or difficulty swallowing, but it's all anxiety.

Sleep more, drink enough water and avoid or limit known catalysts such as alcohol or caffeine. Talk to someone or just type up your feelings and delete them as it will get better. Odds are you don't have any physiological issues and it's all anxiety driven man. Hang in there and find ways to relax.
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post 1571469461 01-18-2019, 12:34 AM
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prayers for you and your fam OP, which reminds me, I went on a thc binge for like 1-2 months and used to think i had the same slurred word symptoms where i'd blank out or the last few words in a sentance would sound lazy, hopefully it was just the thc. Dont stress yourself out im sure you'll be fine.
post 1571471821 01-18-2019, 02:28 AM
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Originally Posted By RonaldMcflurry⏩
I thought that healthcare was free in the UK? What are you talking about with the "250 quid"?
Unfortunately the NHS is only particularly useful for free A&E. Any serious long term medical issues and you'll be waiting months to see anyone who knows what they're doing, then they'll say they don't know what the problem is and refer you to someone else in a few more months. It sometimes can take years even for a diagnosis on less common conditions, let alone any useful treatment.

If you actually want anything done that isn't routine and you're not literally dying, you need to go private.
post 1571472311 01-18-2019, 02:57 AM
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Originally Posted By AndyKerrison⏩
Unfortunately the NHS is only particularly useful for free A&E. Any serious long term medical issues and you'll be waiting months to see anyone who knows what they're doing, then they'll say they don't know what the problem is and refer you to someone else in a few more months. It sometimes can take years even for a diagnosis on less common conditions, let alone any useful treatment.

If you actually want anything done that isn't routine and you're not literally dying, you need to go private.
This is absolute bullchit.
fist yourself
post 1571472381 01-18-2019, 03:01 AM
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Originally Posted By awwchit2⏩
Op, everything you describe sounds like ANXIETY. You’ve gone full hypochondriac. Believe me googling symptoms and thinking you have them, your mind will actually start making you have those symptoms.

I’ve been there quite a few times, but getting ALS at 20 years old is frankly unheard of aside from like 1 or 2 cases srs. Your doctors probably think you’re bat chit crazy and wasting healthcare money.

Google symptoms associated with anxiety. Anxiety can make your muscles twitch, tongue twitch, feel like your weak, mess with your speech, etc.
This.. Happened to me when ages ago when I was like 19, thought i had ALS like Jason Becker because I kept getting these insane muscle spasms in my legs, googled that chit and it said it was one of the first signs of ALS.. My mind decided that I had the disease before even seeing a doctor.. Ended up never seeing one and just ignoring it.. The point of this is that you can cure ALS with your mind bro, don't even see a doctor
post 1571473221 01-18-2019, 03:43 AM
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i have als. mine started in my hand N weakness spreAd to rest. if u have any questions im here
Shut up and Squat!

Living with ALS or dying because of it. ama
post 1571473461 01-18-2019, 03:58 AM
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Originally Posted By AndyKerrison⏩
Unfortunately the NHS is only particularly useful for free A&E. Any serious long term medical issues and you'll be waiting months to see anyone who knows what they're doing, then they'll say they don't know what the problem is and refer you to someone else in a few more months. It sometimes can take years even for a diagnosis on less common conditions, let alone any useful treatment.

If you actually want anything done that isn't routine and you're not literally dying, you need to go private.
That is not the reality that Democrats in the US have led us to believe.
Nuggets of Wisdom
post 1571473991 01-18-2019, 04:26 AM
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This thread makes me sad.

Health is the most underrated thing on earth. Only second to being alive.
post 1571550371 01-19-2019, 01:36 AM
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Originally Posted By NJLife⏩
i have als. mine started in my hand N weakness spreAd to rest. if u have any questions im here
Hello and thanks so much if you can answer any questions. Firstly how long did it take to get a diagnosis? Did you start with body twitches and how did the beginning of weakness feel, was it heaviness, and epescecially in legs did it feel like you just felt fatigued? For instance, my legs my biceps, triceps, tongue all twitch, and i have a abnormal tongue dent on the top of it with the tongue more squishy and more movable on this side as well. My fingers feel stiff moreso on my left hand. i also have noticed only today actually my left arm is feeling weaker; i can still do it but holding a plate feels heavy. I do have noticeable swallowing problems as of recent.
post 1571550821 01-19-2019, 01:55 AM
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Anyway hello to a new day. I thought i was imagining it the other day but there is a definite weakness in my left arm now, in comparison with the right, might try doing some light workout at the gym and see how different each arm feels. Depending this is where the thumb started it doesn't give me much comfort. The thing that does confuse me the most about this is how fast my symptoms came on as most people take like 8 months on average to be told they got ALS. The only thing i can find in young people where ALS starts rapidly is in a tiny minority of cases involving some Gene called FUS or something. I mean im probably more likely to get struck by lightning but
post 1571550851 01-19-2019, 01:56 AM
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Originally Posted By Rad203⏩
Hello and thanks so much if you can answer any questions. Firstly how long did it take to get a diagnosis? Did you start with body twitches and how did the beginning of weakness feel, was it heaviness, and epescecially in legs did it feel like you just felt fatigued? For instance, my legs my biceps, triceps, tongue all twitch, and i have a abnormal tongue dent on the top of it with the tongue more squishy and more movable on this side as well. My fingers feel stiff moreso on my left hand. i also have noticed only today actually my left arm is feeling weaker; i can still do it but holding a plate feels heavy. I do have noticeable swallowing problems as of recent.
Dude the weakness in ALS is CLINICAL weakness. Meaning, it doesn’t get better, doesn’t come and go, and it only gets WORSE. People with ALS can’t even lift up a bottle of water. And it’s not like some days they can or “feel” weaker some days. It’s progressive.

Further the twitching in ALS is associated with atrophy and nerve death. They start in one area and then move up such. It’s not in random places like you describe.

My god you need to get some pussy.

Further if it truly is Bulbar als you wouldn’t have arm/leg symptoms until you’re basically eating through an NG/G tube.

You have an anxiety disorder that has turned into hypochondria. This is probably like factitious disorder as well.

Your doctors won’t tell you this because they are practicing defensive medicine and don’t want to get sued on the 1:999999999999 chance you actually have ALS and they didn’t test for it
Look, i know i don't really know you and all, and i know you probably hear this like everyday, but your just so perfect to me. The few hours we talked were really great even if the convo was stale, your really pretty and chill, and your country thats just perfect :'D i really dont know how to explain it, but i think i have feelings for you somehow. i never felt like this with someone i just met, but i felt the need to get it off my chest. sorry for being all weird just idk how to explain it D:
post 1571551341 01-19-2019, 02:27 AM
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Originally Posted By awwchit2⏩
Dude the weakness in ALS is CLINICAL weakness. Meaning, it doesn’t get better, doesn’t come and go, and it only gets WORSE. People with ALS can’t even lift up a bottle of water. And it’s not like some days they can or “feel” weaker some days. It’s progressive.

Further the twitching in ALS is associated with atrophy and nerve death. They start in one area and then move up such. It’s not in random places like you describe.

My god you need to get some pussy.

Further if it truly is Bulbar als you wouldn’t have arm/leg symptoms until you’re basically eating through an NG/G tube.

You have an anxiety disorder that has turned into hypochondria. This is probably like factitious disorder as well.

Your doctors won’t tell you this because they are practicing defensive medicine and don’t want to get sued on the 1:999999999999 chance you actually have ALS and they didn’t test for it
Im not getting better tho am I? I have been finding walking harder and harder for the last 2 weeks and my hand and now my left arm has started to get weaker. I can feel a literally difference between my hand on my right and my left. And I have been having occasional slurring and stuttering of my speech for the last 2 months that i tended to ignore until my hand started to flair up (accompanied by weakness and a weird shape on one side of my tongue, i should add), dry coughing and pools of phlegm when i wake up i have to spit out.
ALS spreads differently for every patient from what i can tell so i dont have to be literally reliant on a feeding tube before i feel it spread elsewhere, and on the subject of that i have had swallowing problems for atleast a month, ive lost like 3kg of weight since the doc weighed me last in October.

i dont actually want to have ALS for the record, i just think my symptoms are concerning as fuk all things considered and i know its not anxiety related.
post 1571551691 01-19-2019, 02:47 AM
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Originally Posted By Rad203⏩
Im not getting better tho am I? I have been finding walking harder and harder for the last 2 weeks and my hand and now my left arm has started to get weaker. I can feel a literally difference between my hand on my right and my left. And I have been having occasional slurring and stuttering of my speech for the last 2 months that i tended to ignore until my hand started to flair up (accompanied by weakness and a weird shape on one side of my tongue, i should add), dry coughing and pools of phlegm when i wake up i have to spit out.
ALS spreads differently for every patient from what i can tell so i dont have to be literally reliant on a feeding tube before i feel it spread elsewhere, and on the subject of that i have had swallowing problems for atleast a month, ive lost like 3kg of weight since the doc weighed me last in October.

i dont actually want to have ALS for the record, i just think my symptoms are concerning as fuk all things considered and i know its not anxiety related.
So you examined your tongue prior to this scare and know exactly how it looked for comparison? Doubtful.

And ALS does not progress that rapidly to the point where you’re having speech swallowing and walking problems all in one shot. It’s not an acute onset where all areas are dying/paralyzed quickly.

Honestly, I truly think you’re suffering from an anxiety disorder from the result of googling symptoms, reading stories, and somehow applying it to your case. You mentioned that you haven’t done anything in your life. Sometimes mental disorders like anxiety are the result of emotional instability or just unhappiness.

Your brain can make you think/feel like you are weak. Do not underestimate the power of mind over matter. You have perceived weakness, not clinical.

And the fact you fact you said you’ve been having OCASSIONAL slurring/stuttering of speech for two months further leads me to believe you’re full of chit. Had you reached the point where taking was difficult with ALS, IT WOULD HAVE GOTTEN WORSE.

Ugh. I’m done wasting my time. Good luck dude.
Look, i know i don't really know you and all, and i know you probably hear this like everyday, but your just so perfect to me. The few hours we talked were really great even if the convo was stale, your really pretty and chill, and your country thats just perfect :'D i really dont know how to explain it, but i think i have feelings for you somehow. i never felt like this with someone i just met, but i felt the need to get it off my chest. sorry for being all weird just idk how to explain it D:
post 1571551751 01-19-2019, 02:55 AM
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Originally Posted By awwchit2⏩
So you examined your tongue prior to this scare and know exactly how it looked for comparison? Doubtful.

And ALS does not progress that rapidly to the point where you’re having speech swallowing and walking problems all in one shot. It’s not an acute onset where all areas are dying/paralyzed quickly.

Honestly, I truly think you’re suffering from an anxiety disorder from the result of googling symptoms, reading stories, and somehow applying it to your case. You mentioned that you haven’t done anything in your life. Sometimes mental disorders like anxiety are the result of emotional instability or just unhappiness.

Your brain can make you think/feel like you are weak. Do not underestimate the power of mind over matter. You have perceived weakness, not clinical.
I know my tongue didnt used to look like that as i can remember about 2 months or so ago looking at it due to having a weird white lump on the tongue which i thought was some kind of STD. Well my mind cant make my tongue asymmetrical tho can it. If i have to post a video i will show you exactly what i mean about the wasting and the fasciculations that occur on it.
Well Im being seen by Neurologist so i will eventually find out soon enough. And in some rare cases ALS can progress very rapidly from what i read especially in young.
post 1571551891 01-19-2019, 03:05 AM
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#116
  1. awwchit2
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Originally Posted By Rad203⏩
I know my tongue didnt used to look like that as i can remember about 2 months or so ago looking at it due to having a weird white lump on the tongue which i thought was some kind of STD. Well my mind cant make my tongue asymmetrical tho can it. If i have to post a video i will show you exactly what i mean about the wasting and the fasciculations that occur on it.
Well Im being seen by Neurologist so i will eventually find out soon enough. And in some rare cases ALS can progress very rapidly from what i read especially in young.
Lmao if your tongue already atrophied there’s no way you’d be able to move it/talk. Because there’s no innervation anymore. You’re speech would be terrible right about now.

You sound ridiculous.
Look, i know i don't really know you and all, and i know you probably hear this like everyday, but your just so perfect to me. The few hours we talked were really great even if the convo was stale, your really pretty and chill, and your country thats just perfect :'D i really dont know how to explain it, but i think i have feelings for you somehow. i never felt like this with someone i just met, but i felt the need to get it off my chest. sorry for being all weird just idk how to explain it D:
post 1571552131 01-19-2019, 03:25 AM
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#117
  1. Rad203
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Originally Posted By awwchit2⏩
Lmao if your tongue already atrophied there’s no way you’d be able to move it/talk. Because there’s no innervation anymore. You’re speech would be terrible right about now.

You sound ridiculous.
As i said much of tongue looks normal, especially the right side which functions fine pretty much. What im saying is there is possible signs of atrophy, and my GP before i saw the Neurologist confirmed that there was a noticeable difference between either side of my tongue, im going to post a video to try and show im not making this up.
post 1571552171 01-19-2019, 03:26 AM
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#118
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Troll/anxiety disorder
post 1571553321 01-19-2019, 04:22 AM
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#119
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Negged.

Sick of listening to your chit OP.

You'd have been diagnosed and sent to specialists by now even on the NHS.
fist yourself
post 1571553971 01-19-2019, 05:01 AM
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#120
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Wanted to reply to your reply to me opie but can’t find it now.

I know there are strict rules on discussing peds but I just wanted to say a guy I used to work withs friend had muscle wasting and had really good results with something called sarms.

Worth a look but I think they are basically a ped so I won’t discuss any further here, just worth knowing there are options out there.
2006 OG

In on drep fade?

Lord of manor of wansley
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