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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: Intracranial HYPOtension and ctd… Question

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Intracranial HYPOtension and ctd… Question › Reply To: Intracranial HYPOtension and ctd… Question

January 27, 2015 at 2:04 pm #5268
Dr. Diana
Keymaster

Hi Amarilis, Honestly, I don’t think there is anything in the literature about how connective tissue disorders could alter CSF absorption. I’m interested to hear if someone else can find something! I hope you saw in my book about how our CSF leaks can be intermittent, positional, and can be missed on imaging, though. I know of too many patients who were told they didn’t have leaks, only to find them later. I also mentioned a sad case about a patient whose leak was at her tail bone and did not show up on imaging, either. 🙁 Some of these leaks (“occult”, meaning imaging doesn’t always pick them up) can be secondary to the combination of defective connective tissue and high ICP. If this is happening to you, and if they DO find a leak, after repairing the leak, your ICP can then go too high again. How frustrating, right? I have a leak through my nose that is evident only when my pressure is too high. Some of us leak through our ears. These sorts of leaks can often heal spontaneously when the pressure is reduced with Diamox. I don’t think you are alone trying to figure out if you have abnormal absorption, or an occult leak. Please keep us posted! 🙂

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