My first and just about only symptom was a heavy left leg and my swimming partner telling me that I was not kicking hard enough. I was then diagnosed with MS in 2003. My first neuro told me that I’d be in a wheelchair in ten years and that there was no treatment for PPMS. By the time of my next visit to him I knew more about MS than he appeared to know. Then onto next neuro who prescribed Betaferon injections (for PPMS?), then a chemotherapy drug. By this time I had given up on neurologists and I had come to terms with the fact that there was nothing that could be done and I would slowly deteriorate.
Then a friend told me about CCSVI and a patient presentation to be held at The Sofitel in Melbourne with Dr Zamboni and Kerri. I learnt more in that hour or so than I had in the previous six years and, more importantly, I had hope, I wasn’t alone and people with MS were doing all they could to help each other.
Within weeks I had my first venous angioplasty and noticed immediate improvement. I still used a walker and a scooter when out, but everything was so much easier – sitting, standing, walking, hot weather, fatigue. Following restenosis I had second angio 12 months later with minimal improvement and then third angio in March of this year, with noticeably good results which are still ongoing.
Sure, I still use a walker around the house and a scooter when shopping, but the benefits from treatment have been worth every penny. I can occasionally walk around my kitchen unaided (a real plus for someone who couldn’t move without holding onto something). My improvement might be considered by some as minor but it has been a huge deal for me, and it has also given me hope, and I am now doing other things to help keep me as fit as I can be.
I am also looking for a new neuro who will listen to me and be guided by my opinion (wish me luck with that!!).
My wish is that one day not too far away there will be so many of us who have had improvements with CCSVI treatment that it can no longer be ignored and avoided.
If you are out there and have PPMS, please don’t be discouraged. I was but I’m not anymore because of that meeting at the Sofitel.
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