As some of you may know I’m quite new to this site. I was drawn here by the wealth of information regards CCSVI so you don’t need me to tell you about how exciting the developments are in this field. Suffice to say that the possibility that there is finally something on the horizon that could make a major difference to people diagnosed with MS, their symptoms and long term outlook is absolutely epic.
Like many of you I’ve tried most things and not really had any perceivable benefits. I have little confidence in my Neurologist who thinks nothing of doubling doses of Betaseron (which put me hospital) or offering me other alternatives with such subtle side effects as death
I’ve even sat in his office on numerous occasions begging for further tests when I’ve felt like something was wrong with my blood circulation, only to be told that my perceptions are nothing more than various paroxysmal events related to MS. Sound familiar?
I can either wait an eternity for people like my Neurologist to come up with a viable treatment option for MS (yeah, right), or I can wait several years for the ripples of the CCSVI paradigm to reach the shores of the treatment frontline in this country. But the speed of my MS progression means that I don’t have time for either of these.
Thankfully, there now appears to be a third option. Perhaps I can head over to Poland and pursue testing and treatment options over there. For this to even be an option is something for which I owe a great deal of thanks to so many of you on this site. The trailblazers like Erika, whose story, persistence and courage are truly inspiring.
So armed with the information I have gleaned from here I sent Dr Simka an email on the 16th November to introduce myself and enquire of testing and treatment options. And to my amazement, I had a reply from the man himself!
So I am really pleased to report that I am booked for tests on the 15th and 16th December, and I’m really excited
I’m not sure where in Poland, and I don’t know what time so I can’t book flights or accommodation yet. Hopefully that’ll become clear very soon. If the tests reveal any problems with my veins I’d like to get them fixed while I am out there, but I think that Dr Simka is already too busy in December
I plan to share all of the developments with you via this forum in the hope that it might help other people too.
So let the journey begin.......