Last week I saw my neurologist as I had recently had my annual MRI.
I didn't feel compelled to collect a copy of the report before seeing him,
as I usually would. I didn't need to prepare myself, as I feel great on
With my whole family in tow, we enter my neuro's office; we exchange
pleasantries and sit down. He smiles and tells me everything is great. No new
lesions, no activity. This was not unexpected news. It would have been
unexpected for him to tell me there was inflammation and new lesions.
My question to him was, so how long have I been on Tysabri? Two years he
says... That is two years with no activity, two years of it being like I don't have MS. Luckily for me I am JVC
negative, so I don't need to think about changing medications, or the possible
consequences of staying on Tysabri after two years. I suffer no side effects...
I remember after the first infusion I was exhausted, but in hindsight this may
have been the result of the worry and the what if's. I'd always told myself in
the early years after Tysabri’s release that I would never consider Tysabri,
due to the deaths of people on it. However after several years, new research on
hand - a more complete evidence base and being JVC negative I took the plunge.
It's a bit strange trusting a medication... to trust it is working and
working day in day out, with really no way to monitor it, except for the annual
MRI and no new symptoms. All I have to do is show up once a month and offer up
my hand. I don't do anything. It's all rather passive... Which is not really my
style, but hey, there are worse ways to spend three hours!
Interestingly my neuro mentioned that there are, give or take, 250 people in
Western Australia who show up once a month be infused with Tysabri. I hope it
works for all of them as well as it does for me. (I wonder if they have trust
issues?) Sometimes in the first months, people can develop anti-bodies to
Tysabri and have to stop, which would be sad and frustrating. I would love to
hear from anyone who developed anti-bodies, leave me a comment please.
At my neurologist’s initiation, the rest of my consultation was spent
talking about The Lego Movie, and how it is not just good for kids. I didn't
need to ask questions about alternative medications, the what if's regarding medication
efficacy or new symptoms - so what else was there to discuss!
Hope you are well xx