Update on My MS Situation

I went to the Neurologist the other day.  I saw, and received, the films from my last MRI.  There are indeed some new lesions in my brain, but there are some which have gone away, in spite of the fact that this last year I have been only taking the Avonex injections intermittently… To be honest, I’ve taken them less times than I’ve not taken them.  I only took the immuno boosters when I would take the Avonex, otherwise, it’s like lesion suicide (of a sort).

My Neurologist has been privy to my ups and downs with the Avonex, and that even when I was taking it regularly, it was painful, the side effects were awful, and I was getting keloids in the areas of my injections, in spite of the fact that I rotate injection sites and no injection site is the same unless by happenstance.  So, she made a decision, which I was glad about, because I was going to ask her anyway.

She decided that Avonex was too problematic for me; it has proven to be too difficult to maintain on a weekly basis since I don’t self-inject, and with the side effects and keloid issues and the development of new lesions even with regular injections (at the time I was regular).  Since we can’t inject with the more often sub-cutaneous injectables available for the same reasons as the Avonex, especially the keloids, she’s suggested Tysabri, which I’ve been interested in for a very long time.

I had gone to a Biogen seminar where the main focus was Tysabri, amongst other things.  And the efficacy of the drug was astounding.  Everyone I’ve known, in person and online has had no trouble with it whatsoever, as a matter of fact, they have ALL thrived and had an increase in normalcy and function.  In other words, Tysabri appears to give people their lives back, at least to a degree depending on how severe a person is.  I’m not as severe as other people are, and so I have a real hope here.

I’m thrilled to say the least.  I’m excited to know if and when I can start.  There is a catch with this drug.  There is a very rare instance where it can kill a person depending on the genetic makeup of that person.  At the seminar, they talked about a test to know whether or not a person was “eligible” to take it or not.  If the test wasn’t just an idea or in the works, I’ll be very excited to know whether or not I’m one of the many people who can take Tysabri.  I wouldn’t want to take a drug and just hope it doesn’t kill me.  That would be like going back to the 90’s… and kinda stupid and asking for trouble.

I’ll keep you posted.