Tuesday, September 22

MS for the newly diagnosed event. the afterthoughts...

Tonight I attended a event called, "MS for the newly diagnosed" that run by the MS society and sponsored by Serano. When I arrived I was of course early, but it gave me a chance to scope things out a bit. It was at a area hotel, so I wandered in a grabbed a seat in the lobby to see what was happening. It was my first MS event so I was a bit leary in just walking in super early. After I watched people trickle into a room I followed.

In total there was about 18 of us. I was the youngest...I was the youngest by at like 15-20 years...that was a bit frustrating just for me because I am dying to meet people my age with MS, but yeah it was weird for me personally just because I could tell that the focus of the talk was not aimed anywhere near a younger generation...which I get, they have to direct their talks to the audience but I left and my questions were unanswered. there were two presenters, a general neurologist and a RN MSCN, a nurse/ clinical research coordinator that works with MS patients directly.

The first presenter was the neurologist and I was a bit thrown off when his credentials over viewed. I was surprised to learn that this speaker has worked with about 50MS patients, and that its not really his specialty. The best example I can think of to describe it with would be something like listening him talk was like listening to my general practitioner talk...kinda vague, knows the terminology but you can tell he is not the complete expert.

A major problem I noticed right off was that the speaker allowed questions whenever someone had one, I don't mind this usually as long as questions are kept general, like defining terms, re explanation...BUT a small group of people wth all diffenrt backgrounds and expierences, tons of questions is not so good...people automatically started off asking personal questions, relating everything to them and only them as if they were the only ones in the room. It bothered me because it wasent a one on one session, and thinsg should have been kept generalized.

Since there was so many questions I definitely felt as though the presentation was extremely vague and that honestly I have learned more by just reading the website. In that matter it was frustrating, I don't know what I realistic expected during the doctors talk, but I was hoping for some of the whole, this is what happens when you in the middle of a attack, or this is what is wrong, examples of MRI's...just diving deeper into the whole what is MS, progression, symptoms, attacks vs pseudo attacks...ect.

Anyways, he then talked briefly about treatments, where he said something that bugged me to know belief. He talked about the ABCR- Avonex, Betaseron, Copaxon and Rebrif and just kinda generalized what they were and about how everyone the room starts on these drugs as the normal course of action. I was taking notes the entire time and then he said, and I quote "you have to fail a ABCR drug to discuss starting Tysabri." He continued to say how Tysabri is not allowed under any circumstance to treat MS before you take any other drug. I had the urge to ask him to check his facts, cause there is obviously exceptions to the rules...*cough cough ME cough cough.* Then he compared it to chemo...yeah we can obviously tell who is not a Tysabri guy. My whole idea with drugs that to each their own, I'm not going to say Tysabri is the best thing on earth and make everyone take it, I understand the risks and I choose it. I don't knock any one else's treatments as long at they are happy. Luckily I am comfortable in my own treatment, but if I wasent completly sold on it, his talk would have freaked me out completly...luckily it just pissed me off.

He finished finally and the RN spoke about different therapy's and again ACBR's were the only things addressed...I understand that they obviously are the therapies that the majority of the people are on, but I guess it would have been nice to at least address that there is more and then stress that people need to be happy and content with their drugs.

While I am glad that I went just to experience it, I am frustrated and luckily Steph let me dump all my information on her and all my thoughts, it definitely helped...

I hope I kinda covered everything, if any one who reads this is curious or has questions about the event feel free to drop a comment below and I'll be sure to respond.


  1. Thanks for the update on the dinner/speakers. While it was disappointing, I hope you think it was worth the try to go and see if there'd be value for you in either the presenters or the chance to meet others in your age group who have MS too.

    I just read your prior post re your cousin and your difficult day. My situation is different from yours in that I'm the caregiver to someone with MS. Yet, I have similar feelings to yours. A blog is a great way to express how you're feeling and to connect with others who will "get it" more readily than the friends who don't have MS.

  2. I was wondering why other therapies were not presented at these "presentations". I am on Copaxone but I never hear about infusions and the like.


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