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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.

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?

July 11, 2012 at 10:26 am #2573
MJ
Participant

Hi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?

Hi Barb, my son and I both have the BIG, oversized veins on our right side, but both of us have neck pain on both sides. Interestingly, though, my right side is MUCH more affected than my left (more subluxations, low muscle tone, looser joints, livido reticularis is worse, etc). As you know, I’m not a huge believer in coincidences! 🙂 Diana

I believe I may have CCSVI, but nothing is confirmed. I do have most of my pain on the right side, and of course, if I have the enlarged veins, I don’t know which side, but suspect the right. Does anyone know anything about MRI’s? My MRI shows a huge vein on the right side of my head above my ear and going up and across the back of my head. Perhaps this is normal, but I do get very sharp pains on the side of my head above my ear where it shows that vein. It’s a very different kind of pain; it feels vascular to me.