Life with MS & EDS

December 6, 2009

Rebif – Day Two

Filed under: Uncategorized — by mseds @ 12:39 pm

My second Rebif shot went much better than my first!  I was hesitant to try an arm shot, but it was next on my rotation schedule, so I stuck with it.  After a bit of fumbling with the auto-injector (it’s much stiffer than my Copaxone one!), it went well.  I didn’t have any pain, nor did I experience any of the side effects I had after the first shot.  I had a minor metallic taste about 45 minutes after the shot, but it passes quickly.  I did not have any stomach cramps the next morning either.  My favorite part is that I get to take two days off from shots!!  I’m off to D.C. for a business meeting tomorrow and it’s awesome to not have to pack medication.  I can just do it when I’m home Monday night.  So far, so good!



  1. AWESOME!!

    Comment by posey — December 6, 2009 @ 2:06 pm

  2. Good news indeed. Am sure bendy fingers and difficult auto-injectors don’t mix at all, as if you don’t have enough to contend with already. I have had your blog in my reader for a while now & I like to read it because you manage to describe everything so eloquently and at the same time am sure inspire others with either MS/EDS to remain positive even in adversity.

    Comment by achelois — December 6, 2009 @ 4:30 pm

  3. Thanks so much for your kind words!

    Bendy fingers do make things more interesting. I have a routine with shots. I take a deep breath, push the plunger button and then breathe out until the shot is done. If I can’t use both hands during a shot (so that I don’t press in too far, I use the other hand for counter-pressure), like on an arm shot, my husband will hold the injector. So, there we were doing the shot together. I’d breathe in, hit the thing, start breathing out, but nothing happened! I did that twice. Then we started laughing. On the third try, I started breathing out, but nothing happened until a second later. The delayed reaction caught me off guard and I guess I let out a bit of a gasp. That made me laugh more. Laughter is a great way to deal with things!

    Comment by mseds — December 6, 2009 @ 6:08 pm

  4. Just now reading your blog and had to go back into your archives to get caught up. I am looking at this Ehlers Danlos stuff very seriously. Have been diagnosed with MS for ten years now, but no one can address this awful pain and the popping and hypermobility of the hips and ribs and neck. My next neuro appointent is next week. Love your blog, love the way you address issues in such a straightforward way!

    Comment by karen — December 8, 2009 @ 1:22 pm

  5. Hi Karen! I definitely recommend asking your doctor about your hypermobility. I think a lot of people write EDS off as just being “double jointed” and ignoring it. I’ve found that it’s hard to get EDS diagnosed. If it wasn’t for my daughter’s developmental delay, I still wouldn’t have the diagnosis. It took her pediatric genetics doctors to get the diagnosis. I feel like I’m out here on my own with the EDS diagnosis because there really aren’t any good docs who focus on this in the Philly area – not that I’ve found anyway. It’s surprising that a major city wouldn’t have docs in this field. If your neurologist doesn’t have any suggestions, you may want to see if there is a genetics doctor in your area. A rheumatologist may be able to help as well. I need to find one since hypermobility can eventually lead to arthritis issues. I hope that’s a long way away for me, but I see what happened to my grandmother and now my mother is dealing with it, too. For now the only thing I’ve been doing is going to the chiropractor monthly to get my hips, neck and ribs (same areas as you are complaining about!) popped back into place. It’s really helped a lot!

    Good luck with everything! Please let me know how it goes!

    Comment by mseds — December 8, 2009 @ 1:40 pm

  6. Hi. You know, I did the copaxone for many years. I couldn’t stand it after two or three years; tried to keep going, and then I discontinued. My arms were so caved in, the bruising, itching, soreness, the indentations in my stomache and thighs and above my knees, ohhhh I had had enough. I have one lesion in all these ten years. One doc said he saw a second lesion. My doc said it was debateable. To this day, my doc, who was the director of the MS clinic here in the Detroit area, says he still figures my MS was a rare form of it that very little is known about. I have a first cousin, once removed, with the same form of it. For me the issue is the pain. I just can’t take the really strong medicines. I won’t. I have been practicing my own little routines now that help with the pain (yoga, Chiro, exercise, stretching, heat etc). Flexibility was never an issue! The docs are amazed when I come in with numbness, pain, tingling and dizziness yet I can touch the floor with my forehead with my hands behind my back. I can’t feel my fingers sometimes, but they bend all over the place. What can you do? Yes we do laugh. Humor is great medicine. Thanks for a great blog. I am enjoying it and am telling my sister about it too, since she and I are in the same boat.

    Comment by karen — December 9, 2009 @ 3:51 pm

  7. Thanks, Karen! You’re really sweet! Isn’t it fun to see the doc’s faces when they see how bendy we still are? I have a lot of fun with that. May I ask where your lesions are? I have almost nothing in my brain (ha, that didn’t sound very good), which is why it took so darn long to get my diagnosis. But, once they finally checked my spine, wow, did they find a ton!

    I’m so glad I stopped Copaxone before I had any permanent skin damage. I guess in that regard I’m fortunate that we discovered rather quickly that it didn’t work for me.

    Please keep in touch!

    Comment by mseds — December 9, 2009 @ 9:32 pm

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