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Press play to watch The Relief of an MS Diagnosis or scroll to continue reading.
Being diagnosed with primary progressive multiple sclerosis (PPMS) came as both a shock and a relief to me. I know that the “relief” part may not make sense to people who haven’t been through the process, but for years, I was wondering why I had certain symptoms, with no answers.
When I got the diagnosis, my first thought was, “Right, this is it. Now I’ve got a name for it.” I wouldn’t necessarily say I was pleased to have a name to go with the symptoms, but I was relieved, because I knew there was something wrong with me, and I didn’t feel like medical professionals had been taking me seriously.
I really had to fight to get through the system, because my general practitioners were ignoring me for so long. So finally knowing that I had PPMS, which came along with lesions on my brain and spine, actually allowed me to breathe a sigh of relief that this finally had a name, that I wasn’t going to have to deal with the diagnosis process anymore — and that I was going to start fighting it right away.
One of the biggest challenges of MS is that it’s an invisible disease — people can’t tell that I have it just from looking at me. I’ve gotten so much flack in the past for using wheelchairs and parking in handicapped spaces, and I know other people face even worse issues than I do because we look “healthy.”
Although living with PPMS has caused me to face innumerable challenges — including losing my career and having to move from a home I loved — it has also given me a new outlook and perspective on everything. I hope anyone facing a new diagnosis of MS gets the answers they need as they deal with this disease and that they have a close network of friends and family to help them through it.
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At 64, just receiving a diagnosis now, makes me angry that my drs never put 1 and 1 together. Maybe I wouldn’t be using a walker now. Oh well, nice to read ypur positive and uplifting article! Thank You!
I am sorry to hear that, we really do have to keep pushing and even more so now. It is all very new to year and you have every right to feel angry, take care and thank you for commenting.
Hi Rachael,
I still remember my diagnosis – some 28 years ago. Which is quite surprising given that MS has all but erased my memory. I remember being told it was a neurological disease and I fully expected to lose my mobility. What they didn’t tell me was that neurological meant of the brain.
AND when my brain started shrinking, I was terrified. Because I remember thinking “Come on MS, do your worst. Just leave my brain alone.” Oh how foolish and ill-inforned had I been?
Brain fog is not just an annoyance – it is a sign of brain atrophy!
My sister was diagnosed at the same time as you and it was what you expected, I did also have a friend with it and she went from a wheelchair to not being in a wheelchair through relapses. It’s scary that, that’s the vision we picture, but I must admit, it is the brain and cognitive that probably worries me more than anything, thanks for commenting.
Hi, Rachael!
Thank you for sharing your story with us. I’m sorry that your GPs were initially ignoring you. I hope other people who watch your video are inspired.
Hi Jackie
Thank you for your comment it’s much appreciated.
Rach