Let's Kissgoodbye to MS Global
a thousand faces...
on 26 january 2013 my life changed forever. i woke up with a numb and
tingling feeling in both my feet. it was odd but painless. during the morning the feeling spread up to my hips, leaving me wondering what that all was about.
i went to work on monday morning - on wobbly legs, as i didn't feel much - and called my neuro. after telling them about my symptoms i was ordered to
the doctor's practice immediately. a few tests and i was sent to another place for an MRI scan. on the very same day. ugh. you usually have to wait weeks
to get an appointment...
the radiologist, a non-emphatic demi-god in white, broke the news. "you've got a chronic inflammtory disease of the central nervous system. mind you, it
could be worse: it could have been a tumor." ugh. multiple sclerosis. heard
of that one before. in fact, a distant relative died from that disease at about
back to my neuro to begin with what i was soon to learn being the standard treatment: high doses of corticosteroids.
back home to my family, using the time i was on sick leave to read up on that mysterious disease as i wanted to discuss options with my neuro on
"a thousand faces". i came across that line quite often. and i have learned since that no two patients show the exact same symptoms. i have learned
since not to roll my eyes beause someone is slow or walks in a funny way or has to use the restroom quite often or needs to sit down or has mood swings. this could all be me. this all IS me.
if you meet me for the first time, you wouldn't know that i am ill. i can still hide that fact.
however, this disease is unpredictable. the risk of another relapse and further increasing disability and even more constant pain caused by nerve damage is my own personal sword of Damocles.
there is no cure yet but a lot of expensive potential "disease modifying
drugs" on the market, meant to hinder the progress of the disease. for some
it works, for others it doesn't. i spent 75k € over the last 3.5 years for a drug that - apart from some side-effects - did not impress that disease at all. further treatment means the choice between attracting progressive multifocal leucoencephalopathy (PML), cancer and liver damage.
with that in mind, i am not asking you to help me raise funds for more
research - as long as they do not know for sure what causes MS this i not
my main emphasis - i am asking you to help me raise funds to help those like me: affected, struggling, fighting. i want to raise awareness. i want you to realise that there are diseases which, while not being lethal in itself, affect lives to an extent one can't imagine if one is not affected.
i wasn't aware myself up until 3.5 years ago.
open your eyes and look into that thousand faces. ask what you can do and if you cannot do anything yourself for whatever reason, your donation - no
matter how small - will help. don't tell them you are sorry for them, it
doesn't help any of us. be here for us when we need you. lend a hand, give
a ride, encourage and support activities. and bear with us when pain makes
us grumpy and painkillers sleepy.