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  1. Larry

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

    1. Zap



      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.


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