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  • About Me

    Image of StruckTwice

    StruckTwice

    Female, 49
    Snohomish, WA, USA
    Member since December 10, 2007

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    • Thanks

      From nnyl1 September 28

      Thanks for not being offended by my over excitement. Sorry it took so long to get back to you. I had 3 financial situation crop up that I needed to think about resolving. So most of my attention has been on that.

      I thought Crohns disease was an autoimmune disease too?. I would like it if you picked up that book too, because then I would have someone else to talk about what I read.

      I've been on Tysabri for a year now. I still have MS...so I'm conflicted about it---not conflicted enough to stop & I believe it is the best for me...but it is over marketed--so expectations are great then its kind of a dissappointment whem MS is still here , but not worse. The biogen nurse calls every 3 months to ask how it is going, I tell here each time...if the marketing were not so intense, I would be happier with it.

      I recently changed from my first infusion center in a hospital where I didn't get along with the nurses. I went there a year, so that affects my view on TY. I switched to a clinic my doctor recommended...the clinic rents room at a small community hospital.

      I like that much better. She is a neurologist & her husband is a gastrenterologist and there a brochers on MS & Crohns disease. It's like Tysabri patients are welcome there. At my last infusion center, they acted like they were to busy, I was interrupting their day by showing up at the infusion room :(

      Now that I am going to this new infusion room, I expect I will meet some people with Crohns Disease using Tysabri.

      Thanks again for lowering the stress that was building in thatr thread & if you decide to go to Tysabri...you have a DS friend to ask questions on it...but not about Crohns Disease. Fortunately, I don't have that one!

      Lynn

    • Thanks

      From nnyl1 September 25

      Thank you for stepping in on that suppression thread...I was getting over excited about it.
      I read your profile after your response that "calm the waters". I'm not certain how I got so over excited last night about it....

      But I saw on your profile you have crohns disease going on too....
      iamwoman does too, both Crohns & MS going on. Does celiac disease count ?
      Thats a gastrointestinal disorder, if so there is hazymay & Sentinel too that are dealing with gastroinststinal disorders and MS.

      http://www.dailystrength.org/peopl...

      http://www.dailystrength.org/peopl...

      http://www.dailystrength.org/peopl...




      .

      Perhaps you already know from a Crohns support group. But if not I wanted to point them out top you. And thanks for the response, I hope I have settled down now.

      Lynn


    • Hug

      From iamwoman November 2, 2008

      hope your testing for MS comes back negative... I will keep good thoughts... let me know!!

    • Hug

      From chercoats October 29, 2008

      It is nice to have a voice of reason in the political chat...thank you

    • Hug

      From lynn4 October 29, 2008

      Well, I actually chickened out, which isn't like me at all. I think it was because my dr. gave me a choice, an EMG or go back to MS specialist. I first said test and now I am going to go to the specialist.

    Read Hugbook

  • Support Groups

    • Close Health Care Reform

      This is the most important issue for the US.

    • Close Crohn's Disease & Ulcerative Colitis

      Misdiagnosed with IBS for twelve years until ER visit. Hospitalized six times in the next two years. Now maintaining -- still trying to work, but seem to getting other problems (and don't know if they are caused by Crohn's).

      Treatments

      Asacol Not Working
      No change in my symptoms
      Azathioprine Too Soon to Tell
      Doctor decided to switch to 6-MP before we could tell what it was doing.
      Azulfidine Not Working
      Side affect: Headache
      Prednisone Working / Worked
      Only when I have severe flare ups.
      Purinethol Working / Worked
      Purinethol Working / Worked
      Positive Thinking Working / Worked
    • Open Multiple Sclerosis (MS)

      Have not been diagnosed but have many symptoms -- First trip to neuro this Aug and she started me on the neurontin.

      Treatments

      Neurontin Too Soon to Tell
  • Groups

  • Friends


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