The nature of the beast.
Yesterday,18th July I had my annual appointment with my neurologist. Very well aware that my condition has deteriorated, that visit held no surprises for me. I am finding it increasingly difficult to walk these days, and so when he told my my front line medication if now failing, he simply confirmed what I already knew. I have been on it for twelve years, not a bad run.
He wants me to discontinue the Avonex...duh! He wants me to go on the relatively new treatment,Tysabrl. It is a monthly infusion. That means 2 – 3 hours in hospital once a month. He suggested it a year ago and I declined. Now he tells me that if I do not accept this treatment,I will be in a wheel chair in five years or less. I believe him, it is getting hard to walk. The writing is on the wall so to speak, and it is the nature of the beast after all.
The only problem is that I may has a virus lurking in my body. It occurs with M.S. sometimes, If I have this virus I cannot go on Tysbrl. To do so could have catastrophic consequences, not the least of which is possible brain damage or even death. I had to had a blood test to determine if I have this virus or not. My blood is being sent to Denmark in Europe for testing. It cannot be tested in Australia. My neurologist says if the virus is present I could still go on Tsabrl for twelve months maximum. Sounds like Russian roulette to me. If I have the virus I will reject this treatment. A wheel chair has got to be better than a coffin!
Tysabrl is no cure for M.S. though it is proving effective in slowing the disease somewhat. There are other treatments available so all is not lost if the virus is present. My excellent but scary neurologist will just have to come up with one of them. I am not a damn guinea pig!
Yesterday,18th July I had my annual appointment with my neurologist. Very well aware that my condition has deteriorated, that visit held no surprises for me. I am finding it increasingly difficult to walk these days, and so when he told my my front line medication if now failing, he simply confirmed what I already knew. I have been on it for twelve years, not a bad run.
He wants me to discontinue the Avonex...duh! He wants me to go on the relatively new treatment,Tysabrl. It is a monthly infusion. That means 2 – 3 hours in hospital once a month. He suggested it a year ago and I declined. Now he tells me that if I do not accept this treatment,I will be in a wheel chair in five years or less. I believe him, it is getting hard to walk. The writing is on the wall so to speak, and it is the nature of the beast after all.
The only problem is that I may has a virus lurking in my body. It occurs with M.S. sometimes, If I have this virus I cannot go on Tysbrl. To do so could have catastrophic consequences, not the least of which is possible brain damage or even death. I had to had a blood test to determine if I have this virus or not. My blood is being sent to Denmark in Europe for testing. It cannot be tested in Australia. My neurologist says if the virus is present I could still go on Tsabrl for twelve months maximum. Sounds like Russian roulette to me. If I have the virus I will reject this treatment. A wheel chair has got to be better than a coffin!
Tysabrl is no cure for M.S. though it is proving effective in slowing the disease somewhat. There are other treatments available so all is not lost if the virus is present. My excellent but scary neurologist will just have to come up with one of them. I am not a damn guinea pig!
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