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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: Fingernail moons! Did you lose yours? Mine are BACK!! Vid is out!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Fingernail moons! Did you lose yours? Mine are BACK!! Vid is out! › Reply To: Fingernail moons! Did you lose yours? Mine are BACK!! Vid is out!

December 22, 2012 at 4:37 am #3234
jillMEnz
Participant

Good to see you again Diana. I don’t think you looked THAT bad, i think maybe it looks worse because you are so expressive – which I am too! That’s a good thing!!

Yes I’ve lost my moons, also on the white part at the end , there is often only some white part – the rest is just clear.

Al, has even weirder shit. He has no moons and will often have zero white at the end. I must ask him the other things – I can’t remember them right now. At his last drs appointment even his doctor took a sample because he thought it was weird. Who knows what he did with it. I often thought the lack of white was some manifestation of a crud dna to protein message. Prob not, but have always thought it must mean something. My Mum doesn’t have moons either and she has the eds/marfan type body – but isn’t knocked out loaded by fatigue.

We ended up seeing a geneticist and the guy reckoned Al didn’t have Marfans. He only tried to stretch his skin and look for mobile joints. Didn’t take any notice of his “extensions ” elongation in his arms and legs and his fathers family history of aortic anuerisym and the other sudden family deaths. On the upside the same dr does want to investigate his heart and his dads as part of a study he has going on sudden deaths in familys. Can you tell me will an ECG pick up a dilated aorta? What is the best test to show it? I want to make sure they look for it when we get this appointment. Would an abdominal ultrasound show it. This guy said get an abdominal ultrasound at 50 – I thought why wait that long??? Intend to have that as soon as.
Al, needless to say will be stuck in bed this xmas from the trip! But atleast we kinda got somewhere in a sideways way!

BTW, I just read that Marfans people are more prone to sleep apnea.

Hope ou have a great Xmas, my love Jill

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