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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: spinal/cranial fluid leaks anyone?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › spinal/cranial fluid leaks anyone? › Reply To: spinal/cranial fluid leaks anyone?

October 11, 2012 at 1:46 pm #3041
Dr. Diana
Keymaster

Go to a doctor immediately, maybe a sign of a illness.

Boy, I HOPE it is that easy for you… I had to see 4 different doctors, then finally BRING THEM the lab test, where to send the fluid, etc. The test, BTW, is a beta-2-transferrin test (you can google for a lab to do this). Most docs don’t check for this very often, and I found that my docs needed a fair amount of help/hand-holding. Now, when the results came back positive, it was more evidence to my docs that my ICP was high, at least sometimes. I chose to go/stay on Diamox, rather than let them try to repair it surgically. They said there was a 20% chance of developing meningitis. I decided to “roll the dice” because I knew I didn’t heal well, and surgery could very well cause more leaks. Indeed, Diamox took care of it. Many of these leaks self-heal once the pressure is down. I know of one patient whose doctors found SIX leaks! Yikes. I believe they still chose NOT to do surgery (her bones in that area were so incredibly thin). Certainly, talk to your docs, but I’d encourage you to be proactive in getting your fluid tested. Cool? Please let us know how it goes!!! 🙂

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