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Hi Dr. Diana,
1st – thank you, plain and simple (I just want to give you a giant gentle hug right now) for everything you are doing: the research, the motivation of others, the hope you give, and how you inspire doctors to patients (all types of people) to reach beyond the accepted and into the realms of possibility for answers.
2nd – In regards to MS & EDS in my family… I can only give you additional information to chew on at this time, but here is my story in brief. I have Classical EDS, my husband (and brother) I believe to have Hypermobility Syndrome (EDS?), though they don’t think so even as I see the signs, their father has MS. Though undiagnosed our eldest daughter of 4 most definitely has EDS… hopefully will never have MS. We don’t know about our youngest yet. So, just an interesting tid-bit, but I will be very interested in what comes out of your studies. If my kids can assist in your research I plan to assist. I just haven’t had the time to read and print out the forms…. I know that I’ll be sending your their information for the head-circumfrance EDS research as soon as I get it from the doctors.
3rd – I could contact you possibly another way, but while I’m as it, what kind of doctor is best suited to (1.) held address the appropriate medications to get my sinus mast cells to calm down, I’ve only had partial success on my own; and (2.) what type of specialist would be best for looking at my brain MRI in relation to the Driscoll theory (my first ever neurologist just had me get one done- and it is potentially interesting).
I’ve had the eye vibration before, though only for short periods (minutes at most). I have noticed that it is dominantly in one eye (my right), and I’ve heard people theorize that it happens when you over use your eye muscles sending them into muscle fatigued spasms. But, two things (I’ve already forgotten one…) – 2nd: I just had an MRI of my brain done, and my layman’s eyes look at it and see that my brain seems to be squeezed in tight around my eyes and possibly some pressure on my right optic nerve – so, could that be why I have this issue, or just muscle fatigue? Oh, and I just remembered, my 1st thought I think was that there is a specific name for the spasming eye thing, but I don’t recall what it is.