9 minutes, 23 seconds
It was Pentecost Sunday 2012 when the tips of my thumb and index finger went numb shortly after I finished my shower. I remember that day very well as I flew from my home in Amsterdam to London for the long weekend to visit friends and it was the weirdest day ever as I didn’t understand why the feeling in my fingers didn’t return.
Both fingers went numb the following day and I just felt kind of strange – by the end of the week my entire right hand was without feeling, that’s when I decided to see my GP. I also noticed that my hand and arm felt very weak and that I got less sensation in them. I dropped several cups, plates and even burned myself bad on a hot oven tray.
As I’ve worked in IT for many years a first guess was carpal tunnel syndrome – then I remembered I had the same symptoms about 5 years before. My GP made me an appointment with the carpal tunnel specialist 4 weeks later but things progressed really fast. I felt worse and worse and knew something is not right. For 3 weeks I could notice my health and general well being decline, it got that bad that I even visited the A&E of a local Amsterdam hospital – but I I only got a quick examination from a medical student who told me that it’s not a stroke or meningitis and that I’m fine and should wait for my carpal tunnel check the following week.
Luckily I visited my mum in Germany 2 days later for the weekend, that’s when things finally progressed. My GP in Germany, who has known me since I’m a little girl, knew right away that something is not quite right and sent me to the local hospital for further examinations.
As it was Saturday we had to wait quite a bit and I felt like I’m wasting everyones time as I’ve just been to a hospital 2 days before and was told I’m fine and I shouldn’t worry. However, this time they did the standard neurological tests that make you feel really stupid like walking a line and touching your nose with both eyes closed. Let’s just say I failed some of them miserably and I will never forget my mum’s face as she watched me doing these tests. At that point I started to worry myself as I was admitted right then and there. Monday morning I had further tests done, EEGs and of course the MRI. I remember the last thing I noticed when they pushed me in the MRI machine was the face of the head of neurology standing the MRI control room, that’s when I realised that they’re actually expecting to find something.
Following the MRI I also had the lumbar puncture aka spinal tab done that also came back positive for MS.
On June 25th 2012 I got diagnosed with RRMS and they told me that I must have it for a few years already as I had quite a few old lesions on my MRI. Now it made perfect sense that I had these arm/ hand issues one time a few years before. I never ever experienced any other symptoms but feeling tired, I even ran the half marathon a year before and felt strong and healthy for the rest. Until that day in 2012 I didn’t know anyone with MS and am the only one in my family. I’m so thankful for our online MS communities as it definitely is very scary, especially in the beginning.
What motivated me to achieve Mission Summit?
Shortly after my diagnosis in June 2012 I couldn’t really use my right arm and hand, my body was numb from head to toe and I slept for 18 hours a day. I was feeling down to say the least so once I finished my treatment in different hospitals and a neurological rehab facility I decided to adopt a puppy which was the best decision I ever made. My dog Ruby made me leave the house during that bad time, new social contacts, laugh and remains my best companion until this day.
I think it took at least 1.5 years until I felt that I can “start living” again and started to look into alternative, complementing therapies I could try out and slowly started to change my entire lifestyle, from diet over exercise to stress management. I slowly started to improve, step by step.
In 2014 I could only cycle on a home trainer for 5 min but went on with it, added very relaxed swimming a few weeks later, then a bit of running until felt well enough to work with a personal trainer in 2015.
At first I didn’t dare to lift weights or even swing a kettle bell as my mind still told me that my right arm and hand are not working and that I have MS – one can’t lift with MS. Turns out these concerns were all in my head. Once my self esteem returned and I started to train a little bit harder and longer each week, it accelerated everything and made me feel so much better. Exercise improved my quality of life tremendously, the fatigue I hardly ever experience anymore and I even picked up CrossFit 9 months ago and am loving it. I also love a good challenge and when I found out about the Mission Summit expedition to climb Mont Blanc in July, it took me less than 24 hours to sign up for it. These days try to go to CrossFit at least 3 times a week, run and indoor climb to prepare myself. If you would have told me 4 years ago that I would climb a mountain, and not any but the highest in the Alps, I’d call you crazy. Never give up!
What challenges do I have to overcome to achieve Mission Summit
Like many people living with MS the heat is definitely not my friend and so is fatigue. I guess thanks to all the daily exercise my fatigue got less – however, I still notice myself overdoing it at times which results in fatigue or when I do a new kind of exercise – if my brain has too much to think about and process. For all other MS “hick ups” I got my tiny workarounds so they don’t really challenge me anymore.
The countdown begins:
Beginning of May 2017 I got my top rope climbing certificate – I can’t wait to climb outdoors and summit Mont Blanc with the Mission Summit team on July 23!
© Genzyme Europe B.V.
Approval date: June 2017
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