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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: New Here, daughter with EDS/Chiari/High pressure/CRPS/Mito

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › New Here, daughter with EDS/Chiari/High pressure/CRPS/Mito › Reply To: New Here, daughter with EDS/Chiari/High pressure/CRPS/Mito

June 29, 2013 at 3:54 pm #3846
Dr. Diana
Keymaster

Hi donnadear! And welcome! I’m so sorry to hear how difficult this journey has been for you so far. Sadly, you are not alone. Can I ask first, how old is your daughter? If you can help me by filling out the “Symptoms Checklist” under “Articles and Handouts”, and shoot it back to me (please remind me who you are), that would be awesome. Do you happen to have your daughter’s head circumferences (and weight and length) from approximately birth to approximately 15-18 months? That can tell us if she has dealt with hydrocephalus from basically birth (as my kids did), or if it may be something new (as mine was). The checklist will give us a place to start (and her age will be critical, too). Cool? As far as anticoagulation goes, I DO believe that we are prone to clots, and those of us who have genetic or acquired disorders of blood coagulation seem to do much worse than the rest of us. Has your daughter seen a hematologist? They can check for these disorders, as treat as needed. As far as acidity goes, a urologist is trained to help people who are on Diamox continually. Ours had lots of advice, and helped us monitor everything to keep us on track. He DID recommend potassium citrate, instead of the non-citrate form (when I needed some potassium at about month 9), and he explained that it would help prevent kidney stones, too. I HIGHLY recommend a good urologist — this is what they do! I’m curious as to your daughter’s dose of Diamox, too. When I got a bit too acidic, I kept increasing my Diamox dose! Wrong thing to do! Interestingly, after about 2 years, I was able to go off of Diamox completely, and went back on it when I became inflamed after an injury. My kids and I now maintain at a small dose. I am currently working on a non-invasive way to check for this special type of hydrocephalus. Fingers crossed! We NEED a way to do this to avoid puncturing our dura. Sometimes it just doesn’t heal, or reopens even years later. Yikes. BTW, when I asked Dr. Francomano if we should run a study for Diamox, she said, “That’s silly. If the patient has symptoms and/or signs of hydrocephalus, we treat that with Diamox.” Ah, the voice of reason! Hang in, my friend…

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