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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? › Reply To: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

June 29, 2012 at 1:47 pm #2494
EDS99
Participant

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.

2) where can I get a very minimal neck support.. My foam one it hit.

3) does anyone know of a EDS knowledgeable neurologist in the Boston area or New England?

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?)

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