Looking for a "regimen" to call my own...

Tell us what you are using to treat your MS-- and how you are doing.

Looking for a "regimen" to call my own...

Postby duckie_76 » Mon Feb 21, 2005 12:42 pm

I'm new here... just posted an intro, started poking around, found this thread and realized everyone posting is lightyears ahead of me.

A little background: I was diagnosed in 12/04. Decided to go to the National Institutes of Health (NIH) for a corroborative opinion because it was close by and seemed like an institution on the cusp of research. I was mostly asymptomatic, so willing to do all the diagnostic stuff for the benefit of research. Shortly thereafter, started experiencing a more prominent symptom (parasthesia) which progressed relativly fast, thereby freaking me out. As such, I lost my nerve and went running to a neuro with a good reputation.

I'm lost now, though. Everyone I speak to (3 neuros so far) has a different recommendation. No one contradicts the others, but they all recommend different treatments (various interferons or copaxone, but not tysabri). After reading up on some members' experiences with interferons and copaxone, I'm starting to have even more doubts. Now I want to jump into tysabri.

One of the problems is that I haven't picked a neuro. The first one didn't seem knowledgeable enough. The second one was primarily interested in research. The third one seemed swamped with so many patients that I felt as if I was "just a number."

Am I being too picky? How important is comfort when it comes to picking a neuro? In your opinion, is it more important to consider convenience or experience?

Any and all help would be greatly appreciated!
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Getting the right Neuro

Postby noddlebean » Mon Feb 21, 2005 5:58 pm

Hi There

Your not being too picky at all! You have to feel comfortable with who you use for they may pay a part in the decisions that you make.

I also have similar problem where as I have changed my Neuro to someone that unfornately is a bit behind the times. Only just mentioning Tysabri (She called is Antregen the old name!) but I had known about it for some months. I just had to nod my head at her cause it would have been more fustrating trying to explain to her that I already knew the information she was telling me.

I think we all wish we had this "new-age" Neuro that has access to the latest information and is up with the play. But on the other hand the more experienced ones that deal with MS alot can be helpful.

I spose I picked my Neuro specifcally because she is involved in various research work on different aspects of MS. So she may not be one of these doctors that sits on the Net and gathering information but she is being proactive in the research side of things.

Its a tough call who to go with - sometimes I fine my doctor does just as good a job if not better. Whoever is willing to go that extra mile for you and listens!!!

Jill :) [/quote]
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Postby sunnydelilah » Mon Feb 21, 2005 8:16 pm

Pick one that will work with you. I had a Kaiser doc for five years. He told me early on that he would work with me on any drug therapy that showed promise. I now have a female neuro. She works with me. (my company dropped my Kaiser coverage) I was his first patient that he put on statins, at my insistence. Best decision I have ever made in my life. I was his first patient, but not his last as he confided in me before we terminated our relationship. I find female doctors more empathetic.
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