Hello, very happy to be a part of this wonderful community. I finally registered after weeks of doing research on here. I am desperate for tips and advice, and specific questions I should be asking my neurologist.
I was diagnosed 1 week ago, but haven't been extremely satisfied with the answers i'm getting, even though my neurologist's office is supposedly one of the best in Ohio.
Any tips or advice would be greatly appreciated. Thank you so much.
I am confused right now. I am confused why they want to start me on Tysabri and not one of the other treatments available like Copaxone or Avonex. I haven't been satisfied with the response at the neurologist's office, but with lack of funds i'm unable to seek a second/third/fourth opinion. I am so desperate to get back to work, which is why i'm almost ready to just say yes to Tysabri without even knowing what could happen to me in the future as there is no data available(?).
I saw a neurologist Dr. at Dayton Center for Neurological Disorders by Southview Hospital 1 time, he sent me for my testing and the next phone call was from the infusion nurse at the office telling me there were lesions on my spine/neck and brain and that they wanted me to come in for a 3 day steroid treatment. I asked if it was MS and she said, "The Certified Phy. Assistant will talk to you more tomorrow but it's looking very possible. I can't say anymore".
When I went in for my first steroid infusion the infusion nurse (not the doctor or assistant) handed me a Tysabri pamphlet and told me they wanted to get me started with that right away. She then asked me if i'd be able to inject myself, I said "probably not, is there a simpler option?" She said, "yes, with Tysabri you'll come in once/month for injections."
After my first infusion I saw the Certified Phy. Assistant. She was the first person to tell me that I do in fact have MS. She was so quick with everything though... it was like, "you have MS, I want to start you on Tysabri, you'll be back to work in a couple weeks and with this drug won't have another relapse for awhile or at least that's the plan, sign this TOUCH paperwork, bye bye, see the infusion nurse tomorrow for your next steroid injection and come see me the end of September".
She never mentioned another drug/option but now that my fiance and I have done our own extensive research, we're seeing that Tysabri is a secondary treatment(?) for those who fail with other treatments such as other injections or oral drugs. It even says in this long information/warning pamphlet I received in my TOUCH program "welcome" package that it's "ordinarily prescribed to people as a secondary treatment". It also says in the pamphlet from TOUCH, in so many words, that it's not safe to take past the 3 year mark. So, why not start me on a less risky drug that won't cause permanent liver/immune system damage and switch over to Tysabri if the other treatments don't do anything? I know it's a great drug and will probably stop all my symptoms, but surely I can start out with something less risky.......
I am JVC virus negative.
I asked this question to the infusion nurse who first gave me the Tysabri pamphlet and she said they suggest Tysabri to stop all the symptoms and to prevent any other damage, mainly because I have lesions on my spine/neck. She never told me what type of MS I have either.
With everything you've heard, would it be wise to get a second opinion? Would you recommend that people newly diagnosed start on something less risky?
I am scared to jump into a drug like Tysabri. I'm reading that in the 100,000(?) people who have taken this drug since it was re-introduced, there is no data available showing what happens, if anything, once you're on it past the 4 year mark. Will it cause liver failure in my future, will it weaken my immune system beyond repair? This all makes me nervous and after all this reading, giving a shot to myself once a week sounds easy-peasy! Haha! I don't know! I am confused and scared.
I asked what would happen if I started on Tysabri and then wanted to switch to something else, she said it wouldn't be a problem at all..... so why not try something less risky first? Does this make sense? :/