That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth. 😉
I probably invited invited a much larger discussion because I asked his thoughts on the Canada study that < href=”http://blog.thesmithlife.com/?p=1344″>Interferons (aka Rebif) are worthless. He said quite a few patients had brought that study up, but he had not read it. Very disappointing; I thought that was his job. He gave a talk about why Rebif is the best choice. I know everybody has a preferred bottled water even though it is just water; is looks like Rebif may be the drug equivalent of that and he had nothing to say! 🙁
Then we discussed Tysabri. He thinks it is a great drug. I think arsenic will also fix all of your MS problems, but thats just me. He thinks you need to be the right candidate for the drug and if so he will refer you to another doctor who will handle it. He did acknowledge that even under ideal circumstances the longer you on the drug your odds off death increase. Basically no more than two years of treatment. What does two years of treatment buy you in the bigger picture?
Last on the discussion list was the oral drugs. Of those we only discussed Gilenya. He noted two things. People who are taking injections were not leaving for an oral drug. Interesting because there has been a lot of interest in oral drugs. Or does it speak to the added risks with the oral drugs albeit work better. That was not discussed. The other thing we discussed about Gilenya is that your first dose is given at an infusion center where you can be monitored. Basically doctors do not have room to monitor you and if you had problems while waiting in the waiting room for hours they are liable. The drug company’s solution make another group liable hence the infusion center; at least that is more comfortable while waiting. He also noted Gilenya reduces your white cell count. He had one patient that took her count really low, but by other metrics it was okay. She fell and required surgery. She then proceeded to not heal and get an infection. He said he did not know if Gilenya caused the not healing/infection but it was quite likely. She had to be removed from the drug. Fortunately, it is not another death story but another example of the drugs causing problems. 🙁
Lastly he wanted me to get an MRI. It would be interesting to see where I am at, but I am not interested in throwing my money at academic questions. He said if I still had a large lesion he would refer me to a MS specialist, the one he uses for Tysabri. I am not treating MS so he is going to refer me to a specialist? To be fair I am not doing anything. I’ll think about all of this tomorrow. 🙂