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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: Honeycomb rash?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › Honeycomb rash? › Reply To: Honeycomb rash?

January 19, 2012 at 10:12 pm #1690
PalominoMorgan
Participant

KC, usually a cardiogist will diagnose POTS. They won’t always have to put you through a full tilt table test at a stress lab although many of us do have TTT (tilt table tests) done. Mine showed neurocardiogenic syncope and POTS.

As for your doctors attitude towards an EDS diagnosis… seems even she is confused. On one hand she sees no value because there is no treatment yet she notes you tore your eyelid wiping your eye. What’s going to happen if a surgeon ever tries to stitch you up? Or even a dentist? Sure, there’s no “cure” but there are SO many ways to manage EDS’s effects. It also helps to explain so many things and to put your body in to context for other physicians and medical personnel. You can say I have fragile skin till you are blue in the face. They hear “blah blah blah”. If you say “connective tissue disorder EHLERS Danlos Syndrome type _____” you have a better chance of having your symptoms, concerns, PAIN, etc taken seriously. For a condition that there is nothing to be done about the EDNF manages to pack the lecture schedule FULL for days with experts offering just that; practices and suggestions on how to best manage all the various manifestations of the disorder. The whole “there is nothing to be done” attitude is a holdover from the “benign joint hypermobility” days. There are still WAY too many docs in that camp. Many because they have never been taught or shown otherwise. There absolutely is knowledge in diagnosis and there is plenty to be done to manage EDS.

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