Life with MS & EDS

March 9, 2012

Gilenya Update

Filed under: Uncategorized — by mseds @ 9:05 am
Tags: , , ,

So, now I know why blogs about Gilenya were difficult to find!  There’s really nothing to report or complain about!  I started Gilenya over seven months ago and must say I love it.  I can almost forget that I have MS.  I pop a pill once a day and go on with my life.  I don’t need to set aside three nights a week for shots nor do I have to worry about keeping the next morning open in case of flu-like side effects.  Of course there’s no way to know if the pill is actually doing anything positive, but there are zero negatives to date.  I’ve not had any relapses, the eye doctor has monitored me for signs of macular edema (so far, so good), and my heart is great (had an EKG and echo cardiogram and the ticker is fine!)  My optic neuritis hasn’t improved, not that I expect it ever will, but it’s not gotten worse.  I’m not due for an MRI until this summer, so I won’t know until August about my lesion status.  Definitely cannot complain!

The hardest thing about Gilenya is remembering to take it!  It’s quite easy to forget, especially since it is so simple to take.  During the first two months, I missed a dose each month.  But, that brought me to a Sunday start-day for my pill packs and I really wanted to keep it that way to make things easier, so I came across a fool-proof method to remember to take the medication.  Put it with my dark chocolate stash!  Pick something you do every day or crave every day.  Put your Gilenya pack with it and you’ll never forget to take it!  I have a serious dark chocolate addiction.  I keep small squares of it in a kitchen cabinet.  So, that’s where my Gilenya lives.  It’s right next to the bag of chocolate.  I indulge in a square a day and that’s when I take the pill.  So easy!

I also owe updates on CCSVI and EDS, so I’ll try to get those thoughts together soon.  I feel like I’ve been hibernating from blogging all winter.  It’s time to get back to writing again!


  1. Totally off the wall comment: it was thought that I had EDS & MS, but it turned out I had a rather mild EDS and Chiari Malformation – EDS being the cause of the Chairi (weak joint between skull and top vertebrae). It took almost 2 years for them to figure it out – and I was on Copaxone all that time.

    I’ve since never met anyone with EDS -and- MS, however, I could simply be unaware. Just curious, have you ever been worked up for Chairi?

    hope you’re as well as you can be,

    Comment by Al — April 5, 2012 @ 7:06 pm

  2. Addendum: Chiari has very similar symptoms to MS. The most notable un-MS symptoms would be a pounding head ache upon lifting something heavy, and a particularly irregular exacerbation schedule for your MS.

    Sorry if this is old news. I was just wondering. 🙂

    Comment by Al — April 5, 2012 @ 7:09 pm

  3. I can’t recall looking into Chiari before. I’m glad you mentioned it! I’m going to read up on it. I do have a ton of brain and spine (mostly spine) lesions, so I gave up on looking to see if it was something other than MS.

    It stinks that you were on Copaxone for no reason! I see my EDS doc soon, so I’ll have to ask her about Chiari.

    Hope you are doing okay, too!

    Comment by mseds — April 5, 2012 @ 7:26 pm

  4. If you have a bunch of separate legions it probably really is MS. Chiari tends to have either no legions or a few where your brain got squashed a bit by your skull! Both diseases pretty much stink lol. Anyway, just thought I’d drop by. I sometimes read MS blogs because it’s a similar scene to Chiari and there are more of you. 🙂

    Comment by Al — April 5, 2012 @ 7:31 pm

  5. Happy to find your blog!!!! I have EDS, POTS, and now being checked for MS as I have “white spots” on my last. I have wondered about MS for years! I have lots of crazy symptoms not quit EDS or POTS, They come, and go so that is what makes me think MS. You know how it is. Finding the lesions on MRI! The dr now is left with the question, strokes, migraines, or MS causing these lesions. I do have migraines, but I’m sorry my migraines don’t cause these weird symptoms for weeks on end. In the absence of headache, and or aura. Ahhh how frustrating. So I might need some input. LOL
    Here is my blog.

    Comment by Regina Dara Richardson — May 6, 2012 @ 3:54 pm

  6. Hey! It’s always nice to connect with folks going through similar things. I hope you get some answers soon! Let me know what they say. Thanks for sharing your blog link. I look forward to checking it out.

    Comment by mseds — May 6, 2012 @ 4:16 pm

  7. Interesting…What type of EDS (elhers danlos syndrome) do you suffer from?

    Comment by Deb — June 4, 2012 @ 6:53 pm

  8. Hi Deb! I have EDS – Hypermobility (Type III).

    Comment by mseds — June 4, 2012 @ 8:30 pm

  9. Do update us as I am confused. You don’t have MS? Yo do have EDS and Chiari? You have lesions but only near the Chiari location?

    I have MS, fibro, lymphedema, Lyme… what a mixed bag!

    Comment by Kit Minden — July 24, 2012 @ 1:12 am

  10. I have MS and EDS (plus recently diagnosed Raynaud’s and dysautonomia, but I still need to write about all of that.) You have a lovely combo there! It seems that MS is more common in those with EDS, although I don’t have the statistics handy.

    Comment by mseds — July 24, 2012 @ 6:21 am

  11. It does seem to be a common combination. In my support group on Facebook, there are three people with EDS and MS.

    Comment by Kit Minden — November 30, 2012 @ 8:22 am

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