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  • Anonymous
      Post count: 93172

      Hi all,

      Finally have something positive to write about. :) I started getting double-vision late last April and have had full-blown TED since last July. Been on disability since last December. I had about 6 good days in January (days when all the pressure was off and eyes not painful–but still swollen and fixed). Then, after a bad first week in February, my eyes have been so much better for the past 9 days. That is a streak for me! I am hopeful that I MAY be on the way into the cold phase (I pray!).

      My optho told me when I was in the heart of TED (i.e., no good days yet), that I would start to have some good days and then back to bad. He told me that eventually, there would be more good days than bad, and when there were only good days, I had reached the cold phase. Well, that seems to be happening, still I know I may still have some bad days ahead. BUT, I really feel different this time. I feel not only like the pressure is off and pain is gone, but my muscles are starting to get a tad better. I can now look a bit more to the right, where as before I would get excruciating pain if I tried.

      But I am still far from being home free. My eyelids are still swollen and red (though down a bit) and my eyes still bulge some and my double-vision when looking anywhere else but straight ahead is still there, BUT it feels like the stuff that was going on behind my eyes to cause all this has let up (for the time being anyway). Anyway, just wanted to share some positive news. Jen

      Anonymous
        Post count: 93172

        I hope so too. Thanks for spreading “good” news here. ; ) We’ll keep our fingers crossed for you.

        Bobbi — NGDF Asst. Online Facilitator

        Anonymous
          Post count: 93172

          That’s Great Jen! You seem to have been really suffering a lot. I’m praying for you that this is some lasting change.

          God bless
          Ree

          Anonymous
            Post count: 93172

            Thanks Ree! Yes, I have been suffering unimagineably (except maybe for fellow GDers). I really appreciate the prayers. You know I was at an all time low on Feb 7th, the day before my optho specialist apt. It also happened to be the first day I found this site. That in fact had something to do with my desperation because quite frankly I was scared silly when I heard about all the orbital decompressions, radiations, steriods, etc so many GDers with TED had had. That night I cried for 4 hours (it was like a break down), couldnt stop shaking. I cried out to Jesus for help–after ignoring him for several months out of anger. I could barely get uo for my 2:45pm apt the next day. But when the doc told me that only people who smoke usually have really bad TED, it was my first glimmer of hope. Anyway, 10 days later I am much better. I quit caffeine last week so that I could get to bed before 4 or 5AM (am now sleeping normal hours). And this morning when I woke up, my eyes were half as swollen, half as red, I could move them a bit more easily, and I could actually for the first time in 5 months close them without squinting. So maybe within a few days or weeks I can finally throw out the tape! I had my thyroid levels checked 2 days ago and found out today TSH and T4 are normal. My heart has slowed down (probably getting off the caffeine). I am even thinking I may be able to get back to work sometime next month. BUT, time will tell. Thanks again, Jen

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