Benner Posted January 15, 2014 Report Share Posted January 15, 2014 Still at Riverside in the Brain/Stroke Neuro wing. I can't say enough praises about all the staff that have been working with me. Had a team of probably 20+ different doctors and nurses making sure I'm well taken care of and everything is going according to plan. Anyway on to the information.. My main Neurologist has spent hours and hours reading and researching and everyone is pretty sure I have whats called Adems (Acute Disseminated Enchephlomyelitis). It's a Demyelenating Auto Immune Disease. So basically my immune system is attacking the myelin sheath (think of the plastic/rubber insolater around wire) around the nerves in my lower spine and corpus collosum in the lower back of my brain, causing nerves to touch and send all kinds of irradic signals down my lower extremities. So basically I can't correctly control anything below my belly button. It's sort of like a very aggressive quick attacking MS. However much rarer, the highest statistic I've seen is 8/1,000,000 children, with adults being more rare. Mortality rates are 5% and full recovery at around 80%. Since the last update (about Friday IIRC) I'm now able to stand, transfer, and use the walker within my room. They have me taking heavy regimens of steroids as well as 5 rounds of plasmapheresis which is when they exchange all the plasma in my blood system. It's essentially a fancy Dialysis exchange. It wears me out for about 4 hours but then I'm completely wired for the next day and a half till the next round. They're expecting I should be out of the hospital by Monday if not sooner and I'll be taken to inpatient therapy where I'll focus on relearning to walk and use my lower extremities. I'll probably be there for around a month, and given approval can return to work. Also cant say enough kind words for the team at Chesrown Chevrolet for holding my job for me. I'd only been there for 3 weeks so they are under no obligation to keep my job for me and honestly didn't expect them to. Quote Link to comment Share on other sites More sharing options...
Rustlestiltskin Posted January 15, 2014 Report Share Posted January 15, 2014 Keep up the Positivity bro. GL! Quote Link to comment Share on other sites More sharing options...
Gergwheel1647545492 Posted January 15, 2014 Report Share Posted January 15, 2014 Do they have any idea what caused it? Or is this just like something that you were born with and its just now showing up? Glad to hear you are doing better man! Quote Link to comment Share on other sites More sharing options...
zeitgeist57 Posted January 15, 2014 Report Share Posted January 15, 2014 Better news on the prognosis. Scary what something like this can do to your body. Glad the treatments are helping. Thanks for the update and looking forward to hearing more as time goes on! Quote Link to comment Share on other sites More sharing options...
spankis Posted January 15, 2014 Report Share Posted January 15, 2014 Glad to hear this, sounds positive for sure though clearly still a tough process. It sounds like you're doing a great job getting your head around all the info too. Good luck in the coming weeks bud! Quote Link to comment Share on other sites More sharing options...
Benner Posted January 15, 2014 Author Report Share Posted January 15, 2014 Do they have any idea what caused it? Or is this just like something that you were born with and its just now showing up? Glad to hear you are doing better man! It can start spontaneously but has been linked to viral infection, bacterial infection, and vaccinations. I was sick about a month and a half ago with a stomach and flu bug so they're think that caused it. However to truly diagnose this could take years just because they have to see how it progresses Quote Link to comment Share on other sites More sharing options...
MattKatz Posted January 16, 2014 Report Share Posted January 16, 2014 Wow man.....Prayers for your recovery. I had to go in Monday myself to have an Emergency Back surgery....but your proble,m makes mine look like a headache. Quote Link to comment Share on other sites More sharing options...
SRTurbo04 Posted January 16, 2014 Report Share Posted January 16, 2014 See what happens when you go off and get skinny, your body's fighting you for a cheeseburger !!! Hope all gets well man. Quote Link to comment Share on other sites More sharing options...
silverhatch Posted January 16, 2014 Report Share Posted January 16, 2014 Who is your Dr. there? Mine was Brightman. I have spent my fair share of time in the Riverside Neuro ICU. Everyone was awesome, just hope I don't have to go back anytime soon. Best wishes for your recovery! Quote Link to comment Share on other sites More sharing options...
Mojoe Posted January 16, 2014 Report Share Posted January 16, 2014 What a roller coaster. Happy to hear that with treatment, things have a good out look. Quote Link to comment Share on other sites More sharing options...
Benner Posted January 16, 2014 Author Report Share Posted January 16, 2014 Who is your Dr. there? Mine was Brightman. I have spent my fair share of time in the Riverside Neuro ICU. Everyone was awesome, just hope I don't have to go back anytime soon. Best wishes for your recovery! Dr. Lane She's part of a team of 3 from what I understand. Quote Link to comment Share on other sites More sharing options...
silverhatch Posted January 16, 2014 Report Share Posted January 16, 2014 I bet Dr. Brightman is on it. She was the dept head when I was there a few years ago. Quote Link to comment Share on other sites More sharing options...
Green Bastard Posted January 16, 2014 Report Share Posted January 16, 2014 Glad to hear its treatable and a good chance its curable. Hang in there. Quote Link to comment Share on other sites More sharing options...
Benner Posted January 16, 2014 Author Report Share Posted January 16, 2014 I bet Dr. Brightman is on it. She was the dept head when I was there a few years ago. She's a Neuro Surgeon. SO doubt she's doing any on my case. Quote Link to comment Share on other sites More sharing options...
smokinHawk1647545499 Posted January 16, 2014 Report Share Posted January 16, 2014 praying for you. hope you get through it without to much damage. my dad has MS and it hasnt been to kind to him. also have a nephew that has a very rare auto immune disease, and an ex girlfriend with an auto immune disease, those things suck when your body attacks its self and they have to use corticosteroids to weaken your immune system so it wont attack your body. Quote Link to comment Share on other sites More sharing options...
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