Feb 132005
 

I had my neuro visit on Monday. It got off to a bad start when the front office staff decided at the last minute that a ton of paper work had to be filled out and thus my first position got bumped. This in turn meant that he was a hour late seeing me. Surprisingly in my fury my blood pressure was normal, which means it really has dropped. Talk about the original stress test, I was just glad I didn’t stroke out!

Of course we started with the normal neurologic examination which all was going well until we went to test my balance. I got up to do the test and asked him if he was prepared to catch me, a big concern since I am probably a foot taller than him. Well I closed my eyes and did the stand on one leg routine and I was pretty wobbly. My wife said I really missed out on his expression when he realized he might be catching me. He told me to do my other leg with my eyes open, which I was equally as bad so it was probably a fair test. When he told me to do it with my eyes open I asked him: “Is it because you aren’t interested in becoming a human pancake.” He didn’t respond, but in reality he wouldn’t have been able to catch me; just use his body to cushion my fall! 😉

The rest of the visit was dedicated to Tysabri. He is on the same page as me that he wants to wait since I am doing well on the Rebif, and give it time to get some longer term results on Tysabri; especially the safety study. He said he had put some of his patients on Tysabri who were not responding to the interferons. He said it is the longer term data that he is interested in, because one year is hard to gauge the performance of a MS drugs, since the disease changes so frequently. He said if it does hold up to the efficacy that they are selling that it is on par with Novatrone, without all of the nasty side effects and toxicity. Overall, we’re looking at the 2006 time frame to start the medication. On the other hand he said he would have the 2 year data by my next appointment in May so we’d definitely reevaluate my condition then, based upon that data. On a somewhat side note my neuro is opening his own infusion center, focusing primarily on Tysabri, so it won’t be a hassle getting the medication.

 Posted by at 3:24 pm

  4 Responses to “Visit to the Neuro”

  1. Dont you love the Evil Harpy Front Desk Dirty Tricks? Ghhhaaa. That always burns me up. The dont even bother taking my blood pressure anymore. Welcome to the tysrabi denied club!

  2. Hi Erik

    They just released the Tysabri 2 year data yesterday. Basically the same results as the 1 year data. I am hoping to get on it as I also have Crohn’s diease which it is being tested for.

    I see my nuero again on the 24th and if my insurance still won’t approve tysabri I am going to ask to go on one of the ABC drugs for once. Which ones have you tried?
    -Carrie
    http://autoimmunelife.blogspot.com/

  3. I have only taken “R” – Rebif, and overall I am pleased with it; even though it took a year to really kick in. If I were you I would pester the life out of the insurance co. to have them approve Tysabri. The National MS Society and especially Biogen would be more than happy, I’m sure, to help you in your battle.

  4. Why dont you try MBP8298 (BioMS)a phase 3 drug in Canada. One shot every 6 months with no side effects. It has been in the market for 12 years, enrolling patients in Europe and Canada for trials. Read about it on the web site.(www.bioms.com)

 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

(required)

(required)

*