Every 6 months I have a drug called Rituximab at the Royal Melbourne public hospital, in their day clinic. I've been having this for about 7 years, and was a part of the original trial when I was so ill after the massive attack in 2010. It's given to me by means of an IV, through my port on my chest. The drug needs 4.5 just for it to go into my body, as it needs to run slowly. Not sure why?
On Monday May 1st I had my annual appointment with my neurologist. An older chap whom I've been with for years. He initially diagnosed me as NOT having MS years ago. Then a couple of months later I was referred to him again. He was hailed and worshipped amongst the medical community as the best in the country re MS. I had an appointment with him, and 10 days prior I had a massive attack. By the time I was admitted to hospital, I was very ill. This is all PRIOR TO MY NMO DIAGNOSIS. Anyhow, to cut a long story short, (as you can read it all on MY STORY), I was diagnosed with MS and he became my neurologist.
A few years later when he was away on holidays, January 21st 2010 I was admitted to hospital as a paraplegic, whilst in the midst of a massive attack. About a week later I was diagnosed with NMO. When he came back from his holiday, he came to visit me regularly in the hospital, and always moved heaven and earth for me. He was great. Although I always felt that he never listened to me when he was giving me a drug for MS prior to my attack in 2010.
I think it was last year that I organised an outing for some of the people in the NMO Australia Facebook Support group to catch up for lunch. Whilst having lunch, one other person there who is also a patient of my neurologist, told me something that nearly blew my head off my shoulders. She had been to see him, somehow she mentioned me to him, and he started to discuss me with her! He said that he had given me the wrong drugs, and if he hadn't, and worked out what I had, I'd be walking today. I couldn't believe it, so I casually asked her again. She stated the same things, and then I think realised what she'd said, so clammed up. From that moment on, I lost all respect for the man.
I went in to see him last year, and gently worked it into a conversation we were having, that I knew what had happened. He totally denied it, and got a little aggressive.....mmmmmm! Everyone says that I should follow up legally, however it would never be possible as it's he said and she heard situation. The person he discussed me with would never stand up for me, as she really likes him. It is what it is, and I just feel that it's easier to move on than worry about what might be. It's not going to give me my health and "old" life back.
I had a consultation with him on Monday 1st May, which was always the same things, plus him buffing any important questions I was asking about the disease and treatment, research etc. The great news is that he advised me he is retiring! WOOOOHOOOOOOO...as now I can go to someone else. I have know for ages who that'd be, and actually got a referral for him months ago. Watch this space :)
In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey.