Hi,
Intermittently. Since being treated for MCAS it is less frequent. I can’t say it is the worst thing, but perhaps I’m so used to having issues everything gets compared to total down time rather than what it is like to feel well. It is sort of like I don’t know what it is like to feel normal so is it THAT bad?
With that said, when I get this, I feel sick to my stomach. Sometimes I have a mild feeling of hesitantcy in swallowing (not choking but more of not having the normal, unconscious way of swallowing). I get cold/hot feelings in my arms with occasional numbness….usually after sleeping on the latter. I found that a collar worn while sleeping helps when it is at its worst… but otherwise I find it hot and uncomfortable.
Coukd anyone tell me the following:
1) I hv an MRI on order f the cervical region. The doc says it is my choice to get an upright or a supine one. Which should I get and why? Supporting documentation welcomed.
upright is usually preferred — it’s your “normal” position, gravity pulls any potential Chiari down, and because it looks to the researchers as if our brains are “sinking”, they like to see it vertical. Check out the article about craniocervical instability (one of the references listed in Handouts)
2) where can I get a very minimal neck support.. My foam one it hit.
Did you look at the Store on this site? I get mine through Amazon, and have been known to try a few from the drug store…
3) does anyone know of a EDS knowledgeable neurologist in the Boston area or New England?
Does anyone know of an EDS knowledgeable neurologist ANY PLACE?! If so, please add their name to the “good doctors” list! Thanks!
Thanks ahead of time(PS: I am having the darndest time of logging in here from my notification link in my email. Who is the direct contact for web issues?)
If this is still a problem, please check with PalominoMorgan. We’ll get to the bottom of it! 🙂 Diana