Saturday, July 14, 2012

My future and MS

Well I spoke to my neuro's office and I'm going in on Wednesday (July 18th) to talk about my options since I no longer feel comfortable taking Tysabri. Also, because they recently increased my dosage of Baclofen to 100mg a day. It's not completely controlling my spasticity, but it is helping. However, the side effects of taking the much Baclofen is really taking it's toll on me, making me extra drowsy.

So, as I'm sitting here, thinking that my only option is going to be to wait till BG-12 comes out... It makes me think about having a flare during that break time... With my MS, if I'm not on a medication to slow progression, it is really aggressive.

I've had people ask me... Well aren't you worried about being in a wheelchair... well with all honesty, I've been in a wheelchair, so I guess I can say that nothing will come to a surprise for me. I've been in a wheelchair, and worked my way out of it. I just feel like I need to focus on my day-to-day well being, and not the what could happen... because nothing is certain.

I know that people see me on the conference coverage ( and think, oh she is fine... I am in pain... every minute of every day.... but eventually you get 'used' to it... and just learn to live with it. I just feel that I'm not going to let MS keep me down from doing what I love, and that's trying to help all those living with MS.

Maybe now that I know more abut MS and what can "cause" a flare, I can help try and prevent flares... Whereas before, I didn't know I had MS.. and I didn't know what was causing my issues.

I guess I feel more at ease knowing that I can have a flare, not being on a medication... then sitting there for a two-hour infusion, wondering if I'm going to get PML. I understand everyone's views... and the fact that the chance for PML does not increase until have 24 infusions of Tysabri... and you are closely monitored. But by looking, the signs and symptoms of PML mimic MS symptoms.

Just a small clarification of my "odds with percentage"... I have two kids... both of those I conceived while using 99% effective birth control... so now you know where I stand on my chances w/ the percentage of chances.

I just have this feeling in my stomach that I'm SPMS... and it's not being said. I mean, there are so many people that have MS...that are older and have had the disease for a long time... and mine is more aggressive than theirs... and they just flat out say, "It sounds like you're SPMS".

So on my recent MRI... I had NO new activity! Yayyy! But, it stil noted that my previous lesions were still inflamed.... even being on the Tysabri.

I don't know where my future with MS will go... but I know that I'm going to focus on the day-to-day things... and whatever the future brings, I will deal with that when the time comes. You have to think that right after I was diagnosed, I had a really bad flare, that left me in a wheelchair/walker & the right side of my face paralyzed. I've dealt with a lot already... and I have the support to deal with whatever comes my way.

I'm in no way saying I'm going to be "miss happy go lucky" if I have a flare after stopping Tysabri... Cause I will be mad/upset.... but that's normal. My outlook on MS in general will still remain the same, and I will still continue to try and make a difference to all those living with MS.

So, for the future of MS, I have: BG-12; Alemtuzumab; & Teriflunomide to look forward to, as long as everything goes as planned.

I have to be thankful about the 'timing' for when I was diagnosed... because look at all the progress they are making in studies, where as, 30 years ago... that wasn't the case. Now I know that all these pharma companies are making all these new findings in medication to slow-progression, but I just wish there was a little more attention on how to help us in our day to day side-effects of the damage that is already done.

That's enough of my rambling for right now, I will do an update after I talk to the neuro on Wednesday... fingers crossed?



  1. Ashley,you sound so much like me 30 years ago. I had flares (we called them exacerbations back then-can't even remember how to spell it-lol)after my first baby was born, that affected my walking,made me look like I had a stroke with one side of my face lopsided, bad double vision which caused me to wear an eye-patch for months, lost my vision in one eye totally for 3 weeks, lost the feeling on the right side of my body totally for a couple of years, and the feeling in my feet which I tested one time by walking outside barefoot with a foot of snow on the ground and not feeling a thing...what I always called a "flipping freak show". But I was always able to compensate, ignore, learn how to manage, and/or get help from my docs-etc. Not a pretty picture sometimes, and that is why I only look at my future in limited blocks of time. But I will do as I always have, what I need to do to make it work for me.
    And you will too. Armed with the knowledge that you have gained, and the desire to keep learning, and the willingness to apply it and do whatever it takes, you will "win" this fight.

  2. Replies
    1. Ashley and Lynn... You are both awesome examples of "Wellness is a State of Mind!"
      Your positive attitudes and focus on helping others to live better with MS are inspirations to all of us!

      Way To Go!

      Alan :)

  3. I stopped taking all of my meds earlier this year. Copaxone was making me feel too laggy and making me go bald. I wasn't Ok with the giant goose eggs either. What I do now is work out. Live better. Sleep better. Stress less. I don't know what's going on in my brain because I'm unemployed and have no way of seeing a doctor, let alone a neurologist. So my ms may be 1000 times worse, but im living for NOW. And right now, I'm OK - that's all I can ask for.

  4. Jen,

    I've come to realize that me not being on meds, is not a good thing. But that before my diagnosis... so now that I am aware of MS and what I can do to live better with it, I think I will be okay.

    I do my stretches every morning and I try to stay active but sometimes I just can't... I am however, researching like a detox of my liver and such... as well as a body wrap detox. I just feel like I should try and get rid of all of the toxins in my body!

    I also want to speak to neuro on Wed about my meds.... I'm tired of taking so many! But yet, when I don't take my meds... it's "bad news bears".... we will see what the neuro says on Wednesday and I will give an update!