Life with MS & EDS

November 28, 2008

A Reason to Blog

I’ve been trying to come up with a reason to blog for a while now. Unfortunately, I now have a main topic area. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). Apparently I’m hitting the genetic jackpot left and right. My mind has been overwhelmed with the news and perhaps blogging will bring some clarity, allow some place to vent every now and again, and to have a place to track how things are going.

I’m not sure where this will lead or how often I’ll get to post, but here goes nothing….

Ivy

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15 Comments »

  1. Welcome to the wonderful world of blogging. Just found out that my mom’s hospital is considered a MS Center. Not quite sure what that means, but I can pick her brain.

    Comment by Posey — November 28, 2008 @ 9:59 pm

  2. Blogging has been a good outlet for me to deal with my CFS & fybro. It’s also been great for keeping family informed without calling or emailing them all separately everytime I had something to share. Good luck and remember that I’m always available to chat online if you need me.

    Comment by LRNs — November 29, 2008 @ 11:14 am

  3. I am so sorry to hear about all of this. Started thinking somemthing was up when you mentioned about the ON, but wasn’t sure. I think it is a great idea about the blog. Like others said, great to keep informed, vent, journal, and ask for help if you need it. Sounds like you are in great hands, which we know is key. If big sister needs a play date, or anything else we can do, drop me a line. Will keep you in our prayers! 🙂

    Comment by KG — December 3, 2008 @ 7:33 am

  4. So happy to have found your blog!

    Comment by Miss Chris — December 4, 2008 @ 9:58 am

  5. Oops! I typed too fast and entered the wrong blog address. I’m at azchick.blogspot.com

    Comment by Miss Chris — December 4, 2008 @ 9:59 am

  6. Thanks Chris. It’s great to be meeting so many people who are in the same boat. I look forward to reading your posts.

    Comment by mseds — December 4, 2008 @ 12:02 pm

  7. I’m here from Brass and Ivory. I have MS and live in the Philadelphia area too (suburbs). I hardly blog about my MS because I’m trying to have a baby and that’s my main blogging focus. Blogging is a great way to vent, learn from others, and “meet” people in similar situations. Good luck!

    Comment by Merlot — December 4, 2008 @ 1:08 pm

  8. Hi Merlot! It’s nice to “meet” you, too. I couldn’t imagine finding time to blog about MS with a baby. Feel free to e-mail if you’d like. I hope things are going well!

    Comment by mseds — December 6, 2008 @ 11:05 am

  9. Hi, I’m new to this. I have recently been diagnosed with EDS all tho I have been told I was probably born with the condition. I found your Blog an inspiration because I’m been tested for MS in the next 2 weeks with a brain scan because I have reoccuring Optic Neuritis I’m only 23 but I’m so scared. Reading your blog eneteries has made me realise that life will still be normal and fun dispite a few problems.Thank you so much,

    Comment by Claire — May 16, 2010 @ 10:06 am

  10. Hi Claire, it’s nice to meet you! Sorry to hear about the things that brought you to find my blog. Life definitely can stay pretty normal. Stay strong and positive!! I’ll be thinking about you and hope the MRI goes well. Please let me know what they find. Oh, one thing I learned was that checking your brain isn’t enough. If they had checked my spine, I would have known back in 2001 that I had MS rather than waiting several more years and could have started treatment that much earlier. If you ever want to chat, feel free to drop me an e-mail. Take care!

    Comment by mseds — May 16, 2010 @ 4:08 pm

  11. Keep on blogging, please! 🙂

    Comment by Ronja from Finland — October 15, 2010 @ 3:06 am

  12. Just wanted to mention, did they do a specific test for your M.S.
    did they find the plaques on the brain? I ask only because I was mistakenly diagnosed with MS before they found my ehlers danlos, Turns out I never had MS, they just thought I did because of bouts of paralyses, *we found out at age 31 that my paralising was due to neck dislocations pressing against different parts of the spinal cord resulting in paralysis in different parts of the body, (always after a surgery) now they hold my neck when they put me under and happy to say I have not paralysed in about 10 yrs!

    Comment by humptydumpty — December 10, 2010 @ 10:31 am

  13. Wow, that is a scary misdiagnosis. I definitely have a ton of lesions on my brain and spine, so no chance of the wrong diagnosis here. I’m glad you shared your story! That’s something I never would have thought of. Glad to hear that they found the right way to do things for you and that you haven’t had any paralysis in a long time.

    Comment by mseds — December 10, 2010 @ 10:40 am

  14. MS & EDS… I’m just looking into that myself. Have you heard of CCSVI? I was treated for that in July 2010 & it truly gave me my life back when I was screaming downhill from the MS… There are so many new ideas & connections being made… It’s pretty exciting!!!

    Comment by Tessa Rushton — September 14, 2011 @ 6:45 pm

  15. Hi! I’ve been treated for CCSVI twice. The problem for me is that my left jugular won’t open. It’s great to know there are fantastic doctors out there working on ways to keep them open and hopefully they’ll figure out a way that will work for me. Just getting my azygos and right jugular have made a big difference for me. I’m so glad to hear that it’s really helped you!

    Comment by mseds — September 14, 2011 @ 7:54 pm


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