This disease has taken over my life. I've tried many treatments here in Australia like rebif injections, copaxone injections, gilenya tablets, tysabri infusions, rituximab infusions & tecfidera tablets. None of these meds worked for me. It's hsct (hematopoietic stem cell transplant) that I'm hoping will be the light at the end of a long tunnel. The treatment is not readily available in Australia The issue is my neurologist does not support me getting hsct. It wont work he said. Hsct has been described as an aggressive high risk treatment with mixed outcomes.
Overseas clinics offer hsct but Australia readily does not. The official stance of the ms society Australia is not against stem cell transplants but says that more research needs to be done to establish its effectiveness & safety for ms sufferers. Ms sufferers have still gone ahead & halted their ms progression with hsct. That's the primary aim of HSCT. To halt progression. Any other possible improvements in ability are a bonus. Ms sufferers have taken matters into their own hands & have gone to overseas clinics for hsct. They have reported some amazing results. I'm hoping that I can be one of them.
Ms affects sufferers differently. No two people have the exact same symptoms. Some sufferers have minimal disability & slow progression. I'm afraid that's not me. The neurologist described my ms as being aggressive.
I've been rated as having a expanded disability status score (EDSS) of 6.5. Thee score only goes to 10. At 10 the person is dead.
I applied for hsct in Russia. I explained my situation & what my EDSS is. They said they will accept me for hsct on 10 April 2018. If I could have this treatment I'm thinking perhaps I could have a chance to have a life as right now it's anything but that. I'm single with no children, I no longer work, my drivers licence has been suspended & I don't have my health. So clearly I have a lot going for me! Despite a lack of all these things I still want to improve on my situation. Starting with improving my health. I hope you can find it in your heart to donate & help me get to Russia for hsct.
I will endevour to post updates along the way and keep you across my treatment.
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