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-   -   yeah finally starting soliris wednesday (https://www.neurotalk.org/myasthenia-gravis/252964-yeah-finally-starting-soliris-wednesday.html)

azwild 02-04-2019 03:01 PM

yeah finally starting soliris wednesday
 
hi all just a quick update, been struggling lately best that i start backward just got released from hospitals last saturday , been in three hospitals last 10 days local transferred after 2 days to barrow neurological for 3-4 days and then tried to go home lasted 1 night ended up at mayo clinic hospital for 5-6 days was also hospitalized in mid january at barrow with myasthenia crisis was in neuro icu for plasmapharisis they decided it was too risky ,had testing done spne ct scan since then i have devoloped spine fractures at t7-t5 with no trauma, they are blaming steroids , barrow felt the risk was too great and gave me pain management didnt last 1 day ended up at mayo they werent too keen on surgery also radiational surgical intervention came to my rescue , it was a battle between drs to get them to sign off on it i had my spine injected with cement drs said it was one the worst cases according to neuro surgeon , just blows my mind how these fractures can develop,

AnnieB3 02-20-2019 10:31 PM

Hi, azwild. Haven't seen you in a while!

I'm sorry you're going through so much. Yeah, I blame steroids too. Seen a lot of friends end up with brittle bones.

I hope the drug works for you!! Can they even lower your Pred dose? You don't sound very stable. Have they checked for other things going on, that might be making MG worse?

I hope you will get better!!! Life totally sucks when MG decides to act up!

:grouphug:
Annie


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