Frustrations with MS

I know that I always seem to be very positive about dealing with my MS and I really try to have the best outlook I can, but sometimes that’s REALLY hard to accomplish, ya know?

Anyways, a while back I made a blog about “Taking Tecfidera” … I love that the side effects pretty much went away for me after the first month of taking it. But now I’m having a dilemma…

Back in January, I went to see my neuro and spoke about some ‘issues’ I was having in regards to MS. My leg was dragging, very weak, facial numbness, etc. Well, it just so happened that I had been on Tecfidera for 6-months when I went in about this, so we did a MRI to see how Tecfidera was doing in regards to my MS.

Okay, so I started Tecfidera in late June of 2013, had an MRI done July of 2013, so that’s what this new MRI was being compared to. Well, I had new lesions, 3 of them… in a 6-month time while on Tecfidera. Now, don’t let that freak you out, because we all respond to each medication differently… it just seems like none of these medications want to work for ME. It’s been stated in the past that my MS “might” be more aggressive than others.

So – I agreed to go and have the JCV index test done. Basically, telling me what my chances are of getting PML if I go on Tysabri. I had been on it before, but stopped when my blood work came back 6 months later, being JCV Positive.

Well GUESS WHAT! My JCV blood work came back to my doctors office… and I’m going to go speak to him in two-weeks about starting Tysabri again, because my results say that I’m JCV negative/borderline negative? Not sure what all that means. But yeah, I’m completely lost right now.

I mean, SO many people told me that it was a good thing that I was diagnosed at a young age, because that means I could get on medication sooner, and slow my progression. Well let’s see here… I’ve been on Avonex, Tysabri, Copaxone, Tecfidera and now maybe Tysabri again? (in that order) It’s just a lot for me to take in…

Just goes to show you that there is no ‘guarantee’… and I know I’m being a Debbie downer right now, but I SO need it right now. Is it like this with any of y’all? You feel like you are on the right track, doing the best you can do with your MS, then things just pop up and make you stumble backwards?

Now, I’m not saying that I’m for sure getting on Tysabri just yet, I need to figure out exactly why my results have been so weird… Negative, Positive, then Negative/Borderline Negative? Has anyone else had those kind of results? It’s not that I have bad side effects w/ Tysabri, it’s just… so much to take in with the changes going on with me physically and mentally, to really take in to account everything else that I have to make decisions about in the near future.

And yes, I am doing better after having 3-days of IV Steroids, but I’m not back to where I was just yet. I’ll be sure to keep everyone posted after my appointment w/ my neurologist.

xoxo
Ashley Ringstaff
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Comments

View Comments (7)
  • Lowdramamama
    5 years ago

    Hi Ashley! I was dx’d w/MS in 1985, age 25 when there was nothing for MS. I went into complete denial mode & never “followed up” until 25 yrs later, when there was NO denying that “something” very wrong was going on. Immediately neuro dx’d my MS as SPMS — and I was the 6th patient at UTSouthwestern Dallas’ MS Clinic to start on Gilenya 11/2010. Since then my 3 annual MRI’s have shown no disease activity or progression. I do have “innumerable” lesions on my brain…and have to deal with the fall-out those have caused. I have NO idea what your situation is, or anyone else’s and don’t want to dish out medical advice…but the primary concern for pre-Gilenya bloodwork was whether or not I’d had chicken-pox (I had & that was a good thing). JCV & PML(?) were never mentioned by my doctors, and I’ve not read anything about those from the manufacturer, Novartis. Anyway – just some more input for you! 🙂

  • altmar
    5 years ago

    Hello, I did Tysabri for 2 years, and it was great but I stopped because I resulted JCV positive. Now I am on Gylenia and it great. Basically is just daily pill so you won’t have to submit yourself to depressing days at the hospital.
    Ask to your doctor, maybe you can take it as well 😉 Good Luck

  • Laura Kolaczkowski
    5 years ago

    Ashley, your unfortunate streak with these drugs continues – that stinks. I was not familiar with borderline-positive for the JC Virus assay and found some good information on the web by doing a google search. It seems the second generation JC virus assay in use now is much more sensitive and the evidence looks like these low end titres are really not positives for the JCV. I hope that’s the case for you if you decide to go back to Tysabri. With it taking a good six months or more for any and all of these therapies to work their ‘magic’ I’m wondering what else is going on that your neuros are flipping treatments more often. Have you considered a second opinion – getting a fresh look at your results and the treatment options might be a good ideas at this point. I’m sorry to read you are continuing this decline. ~Laura

  • Ashley Ringstaff moderator author
    5 years ago

    Laura –
    Thanks for reaching out.
    The neuro I have now IS my second opinion. The only medications that have not slowed progression that I’ve taken are Avonex & now Tecfidera… getting go Tysabri in the first place was my choice, and I stopped Copaxone because I developed a allergic reaction to it.

    I go see my neuro on the 14th – so will keep you updated 🙂

  • Chrissy
    5 years ago

    When explaining the jcv test to me, my neuro did mention that sometimes it can come back negative, and be incorrect. Not sure if this is why you’ve had such inconsistent results, but it may be an explanation?

    While my experience with the disease has been very different than yours has so far, I totally understand that frustration peice. It feels like everyone is just taking stabs in the dark in regards to treatment, and we end up being a human guinea pig… Keep your head up and good luck!

  • Ashley Ringstaff moderator author
    5 years ago

    @cyndihart – My first neuro, the one who diagnosed me that wasn’t a specialist, didn’t do what was best for me. He made me a walking pharmacy.

    I’m sorry to hear of your struggles. I can totally understand and know how you feel with the ‘constant flare’ feeling, because I have it as well. I actually was on Tecfidera and it didn’t work.

    I’m sorry that you don’t have resources close to you. I couldn’t imagine living in WA state… though I think I would enjoy the weather, compared to the Texas heat.

    I’m glad that I went ahead and got my ‘second opinion’ with an MS Specialist. Now I know so much more than what I was initially told. I can’t believe you haven’t done an MRI follow-up… that’s odd.

    If you’re looking to migrate back South… that’s awesome! I love living in Texas, just wish I could vacation in Canada or something during the summer months lol

    Keep your head up and don’t settle! Message me on FB if you wanna chat and I can help you find some resources, or at least try. https://www.facebook.com/AshleyRingstaffMS

  • 5 years ago

    I was diagnosed on Dec 1, 2012 after 2 decades of unrelenting symptoms and flares all of which where attributed to mental disorders. What a relief to discover I had MS! My neuro told me I had a “mild to moderate” number of brain lesions, I could clearly see at least 7. I also have optic neuritis. I was told that my risk for PML was high and placed on Tecfidera before it was released to the general MS community. Though I’m supposed to have RRMS I feel like I live in a perpetual flare. The flares may not be of the intensity and duration that they where before I started Tecfidera but they just keep coming. It’s been a year and 4 months since my diagnosis and my neuro hasn’t even suggested new MRIs. Since the worst part of the flares only last about 3 days and I live 150 miles from my hospital Ive never been placed on steroids. So Ashley hon, frustration, yeah, I know what ya mean. I used to like to run on a treadmill (never the road) when I got frustrated, then I started falling off of it. I live in a remote area of WA state and suffer greatly because of the cold since Im a southern born and breed. Im trying to focus my frustration on finding a good southern location with a good MS specialist and community. Taking all that negative energy and sending it into a positive outlet.

    You have been an inspiration to me.

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