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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: Jugular Valves

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › Jugular Valves › Reply To: Jugular Valves

September 15, 2011 at 9:41 pm #1474
Dr. Diana
Keymaster

Chicken Boo,
Along these lines, how many here who have had CCSVI treatment had their renal and iliac’s also looked at and treated? My IR does those veins also and on my second procedure (I went in to have pelvic congestion syndrome treated – yet another vein issue) and looked at all my other veins again and my left iliac won’t stay open and was determined to be May-Thurners Syndrome (I got a stent put in for that one). But also, my left renal vein will not stay open either, though it is only stenosed 50% (all my others are 70-80%).

So, I have two theory’s: One, if you have CCSVI vein issues, you probably have vein issues all through your body (I suspect the veins in my legs are faulty too, but haven’t had the US done on them yet). Second, in doing some research on the renal vein, it is linked to Nutcracker Syndrome and people with NS tend to have autonomic disorders. Dr. Diana, have you ever heard of this connection?

Hi ourfullhouse, I had my iliac looked at, too, and all was fine. I didn’t have my renal looked at because I have no signs or symptoms of kidney issues. Docs have been using stents for renal veins forever — especially for dialysis patients. I completely agree with your theory that we likely have venous issues all over (hence the development of POTS, varicosities, etc. Why should IJV’s get all of the glory, right? I also see the vascular changes in the fundus of the eye. MS patients can get autonomic dysfunction, but not as easily as EDS patients, it seems. That makes sense to me because EDS patients have weak vessels to start out, and MSers end up with weak vessels (likely due to mast cell degranulation — my hypothesis). It’s as if EDS patients start out with one foot in the MS box. I will mention, though, that many MS patients I’ve met with autonomic dysfunction actually had undiagnosed EDS! Imagine that! I have an EDS friend being evaluated for Nutcracker Syndrome now, but my feeling, again, is that she has mast cell disorders, as she has MANY veins affected (and has CCSVI). Great thinking! 🙂

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