Hi I am new to this forum and of course with a new 'fresh' injury. My story starts with fact that I have an autoimmune disease called vasculitis. It was stable and cool for last 10 years and I was on constant intake of 5 mg/day prednisolone and blood pressure medicines. What happened is my doctor at the time decided that I'm young and strong enough (29y old) to try and reduce my prednisolone intake initially to 3mg and then to 1mg. Long story short it caused my vasculitis to wake up again and because it's a cardiovascular disease it bursted one of the blood vessels at my spinal cord that flooded it with blood and compressed it at C5-T4 level. I had two surgeries and have been diagnosed as ASIA A at injury site. Back on 20mg/day prednisolone.
After now spending 2 months in hospital and 3 months at rehab I recovered to a degree and I have functioning arms, although my left is significantly weaker. I can also keep my balance to a degree although far from perfect. I also have feelings of some more muscles just not on the outside - I mean it feels like I if I could stretch them in my legs and elsewhere just you can't see it outside. As if they are weak or something. Also before being discharged from a rehab centre they did another ASIA test on me and it seems my sensory feelings moved down one level to T5.
I'm back home now doing 3-4 hours of training daily - an hour with my PT, an hour with weights for upper body and an hour on a passive bicycle.
I also have been offered a potential experimental treatment by one local scientist that works with stem cells. I have been injecting stem cell exosomes for the past month and it seems to be giving some of those 'under skin' feelings back. I also can move my legs slightly to the side if I lay down and my knees are bent. Not sure though if this comes from my abs or buttocks muscles. We are also trying out stem cells directly intravenously to see if that will give anything back. Since it costs me nothing I'm all into this game. Thinking of adding a FES bike into a mix of all this to maybe give those cells a bit of 'training'. Still a long game at least for a year ahead.
Just a million dollar question - what are my perspectives potentially? I'm considered complete ASIA A but I do feel some back muscles lower than my injury site. I also have some irritation feeling at my penis, can push things out in a toilet after little stimulation. Not sure if this is relevant though. Anyone can relate to anything I write about above?
After now spending 2 months in hospital and 3 months at rehab I recovered to a degree and I have functioning arms, although my left is significantly weaker. I can also keep my balance to a degree although far from perfect. I also have feelings of some more muscles just not on the outside - I mean it feels like I if I could stretch them in my legs and elsewhere just you can't see it outside. As if they are weak or something. Also before being discharged from a rehab centre they did another ASIA test on me and it seems my sensory feelings moved down one level to T5.
I'm back home now doing 3-4 hours of training daily - an hour with my PT, an hour with weights for upper body and an hour on a passive bicycle.
I also have been offered a potential experimental treatment by one local scientist that works with stem cells. I have been injecting stem cell exosomes for the past month and it seems to be giving some of those 'under skin' feelings back. I also can move my legs slightly to the side if I lay down and my knees are bent. Not sure though if this comes from my abs or buttocks muscles. We are also trying out stem cells directly intravenously to see if that will give anything back. Since it costs me nothing I'm all into this game. Thinking of adding a FES bike into a mix of all this to maybe give those cells a bit of 'training'. Still a long game at least for a year ahead.
Just a million dollar question - what are my perspectives potentially? I'm considered complete ASIA A but I do feel some back muscles lower than my injury site. I also have some irritation feeling at my penis, can push things out in a toilet after little stimulation. Not sure if this is relevant though. Anyone can relate to anything I write about above?
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