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Larry

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  1. Larry

    How are you doing now? I have similar symptoms and diagnosis as you?

    1. Zap

      Zap

      Hi,

      Presently I'm in a bit of a relapse symptom-wise.  I've never been close to normal, but was at least doing better with respect to pain and fatigue.  I've been following a diet regimen throughout 2017, and relaxed a bit during the holidays which I'm sure didn't help.  Things were also stressful, which also worsens my symptoms, too.

      Locally we had a fundraiser to bring greater awareness for dysautonomia, and there is going to be a research study that will test patients for auto-antibodies.  I'm expecting to find out more this month, and potentially be part of the study.  A positive test may be able to result in immunotherapy (IVIg), which holds a lot of promise toward improving day-to-day life and symptoms.

      In the interim, I'm trying to get back to where I was before, but I'm still limited in my daily activities either way.  Hope this helps, and I'd certainly be interested to find out more about what you're dealing with.

      Regards,
      Corey

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