I have been a little quiet lately, as before I continued full steam ahead I needed to be sure Russia was where I was headed. Back in April I saw my neurologist who requested some more tests to ensure I definitely didn’t meet the criteria to have the treatment here in Australia. I had another MRI and this report showed some changes since the last one back in Oct 2013.  Some lesions are bigger and some smaller and the fortunately the large tumeffective lesion had shrunk however it has now left what they call a black hole in my brain – a cavity! This is where there has been repeated inflammation, leading to complete destruction of both meylin and the axons themselves. These areas strongly correspond to disability and therefore I now feel I have reached my maximum recovery (about 80%) from this last attack. The MRI did not show any enhancement on the lesions therefore I would not meet St Vincent’s Hospital trial criteria.

Another test he ordered was a John Cunningham Virus (JCV) antibody blood test. This came back with a changed result from being negative back in Nov 2013 to now JCV positive. Far out that is very scary information with the risks of the medication I am currently on (tysabri) now higher because of this result. The risks increase with each treatment and especially after the 12 month mark. I need to be careful I don’t develop PML which can be fatal. I am so pleased that I will having my 12th infusion in October and will come of this nasty drug to have my HSCT phew!!!

So next my neurologist wanted to see if speaking to Sydney would make any difference. Of course I knew I didn’t meet the criteria but I was happy to let him “TRY” to help me get in and am very fortunate to have a neurologist who is willing to help. I was right hehe, they wont accept me into the trial. I would have to have failed multiple drugs and that would mean time and waiting and seeing what would happen. Well waiting is something I don’t want to do and so the Road to Russia it is!

Please keep your eyes on this site and/or my facebook page for the latest information regarding my journey and I apologise in advance for taking up your time but we are about to get busy as I only have 7 months to get this happening!