It will not let me post in this thread anymore. Can someone help? I’m suffering even more.
I’ll summarize in case the link does not work (I know how this site wouldn’t let you post links).
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Asymmetric loss of soft tissue (muscle, cartilage, gum tissue, collagen, etc.). Left side is my affected side; however, the right side is ALSO affected. It just does not have the deformity that has sprouted on the left, AND it has better strength/looks compared to the left. I’ll explain it like this: The left side of me feels like something is disconnected, the entire side in comparison to my right. Left side is like a car tire that needs air, the right is also weakened and lost soft tissue, not as much, and it still feels like the tire has enough air in it.
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Have an “empty” look - an abnormal look that even those with M.S. and ALS do not have.
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Deformity has occurred on left side of body, left leg and arm are out of the normal alignment, same can be said about fingers and other such things. Even my gums on the left side have deformed, causing me non stop gum pain that has put a huge amount of destruction on other parts of my body (organs like Liver/Kidney).
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Loss of normal function for my digestive tract; genitals (destroyed and massacred, penis used to be 7 and a quarter inches erect, and had large testicles, now both are shrunken down enormously and have not worked since 2019, my penis has actually smoothed out on the left, the loose skin around the head has erased and it is smooth there in comparison to my right).
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The feeling on my left side is muted compared to my right, if I swallow food or poop, I can feel the right side and the left is muted. I can still feel on the left; but, it is not the same as my right. I scratch my left arm and then my right, my left has a muted feeling compared to my right. I get more satisfaction scratching the right side compared to my left. I’ve been to the neurologist many times in the past five years and (I’ve seen four) they all claim they don’t see any proof of neurological problems. I have had three brain MRI, two EMG tests, and explained multiple times my problem in details. I am not convinced it is unrelated to neurology.
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Because of the asymmetric loss, my spine has shifted and become deformed as well. Like a stick in the ground and there is snow on each side, you remove the snow on one side and the stick will shift to one side more than the other.
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I now have sleep Apnea because of this. Obviously because I have a deviated septum. I also am having trouble breathing since this began apparent to me in 2017. It’s just gotten worse and worse, that now they say I have asthma. They don’t know it’s THIS that is causing this.
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My left ear is curled on the bottom, it has a huge crease in the earlobe. If you pinch my left side anywhere and then pinch my right side, you will feel the emptiness in my left compared to the right. Abnormal emptiness.
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Lose soft tissue around the inner eye - exposing my tear ducts which prior were hidden behind skin/tissue.
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I tried lifting weights in 2020 when I knew things were going haywire. Afterward I would shake grabbing a gallon of milk, something that never happened before and I was an avid weight lifter from age eight until age 27. I also would run on the treadmill in 2020 and when I exited, I would get empty headedness. Another thing that never happened before. This is all linked to this ONE problem.
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Problems with imagining imagery since this began, I used to be able to lie down to sleep and see the image of something like a three, a shoe, a person, etc. Now I no longer can do that.
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Knuckles between beginning and end of fingers are warped and withered (this is a theme that is all over me, except it really shows in this part).
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Get tired so easily, I can go mow the lawn and after one minute my hands are tight and fatigued as if I was gripping a 200 lb. barbell for 10 minutes. Same can be said for my legs.
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I have gotten fatter on purpose to the point where I’m at 30% body fat because I will look REALLY sick if I didn’t. I have been losing clothing size, even with gaining so much fat. Clothes slip off on the left side of my waist. My face also looks like I’ve lost weight since 2017 - even though back then my body fat percentage was about 15%, and now it’s 30%.
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Lost some hair on my left side of body (all over, feet, legs, torso, face, head).
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Rectum opening has grown in radius by a lot - due to losing whatever I’m losing, when you lose something around a hole, the hole becomes bigger. This can be applied to my left nostril as well.
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I cannot walk well anymore, walk like a robot. I also cannot walk down declines that well, I can walk up inclines far better.
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Ear ringing - only in my left ear. It occured around December of 2021, or 2022. At first it was my left ear, then it happened in my right. My left ear ringing was so apparent it was down right distracting. The right ear ringing subsided, the left ear ringing is still present. I don’t know if it’s less, or I’m just used to it. It doesn’t feel as “intense” as when it first came about. I say I just got used to it.
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I’m Caucasian, with white skin. I say this because I get easy red marks on my body/face now. I can shave my head and the slightest touch on my forehead from my forearm while shaving will leave a red mark for about a minute or two. I also want to say I have gotten random bumpy and slightly thick lines on the left side of my arms/legs sometimes. They even come in an “x” shape sometimes. They disappear after about a minute. These can sprout up without me even coming in contact with the area.
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When this first became apparent (around 2017), fast forward to summer of 2018: I lied down to go to sleep in June and my left leg would tremor uncontrollably for about an hour. This happened for a month straight. Fast forward to 2020, I would get tremors in my lip area, eyebrow area, and other areas - this was followed by atrophy. These tremor episodes have ceased; but, my atrophy remains continued. I said this before, and I want to repeat it again that this affects my left side MORE than my right. My right is affected too; however, it is not deformed (like the alignment of my left leg/right arm + shoulder, left gums) like my left. And my right side still feels “solid.”
Well, I’ve been everywhere I can to get checked out. I’ve been scanned in almost all parts of my body, have had 30 or so blood test since 2020 and no answer.