December 22, 2012 at 4:37 am #3234jillMEnzParticipant
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 JillDecember 22, 2012 at 5:32 pm #3235
Hi Jill, So I didn’t look “that bad”, huh? I’LL TAKE IT! 😉 I think the best way to measure the aortic root is with an echo. I recommend getting a copy of the report and checking the root size on a graph at Marfans.org. We’re all human, and I’ve seen some HUGE errors in interpretation. Can you take a pic of your nails (or maybe just the pointer)? I plan to help you get your moons back, and those photos will be great for objective signs of improvement. Does Al sleep with the head of his bed elevated? HUGE help. Big hug…December 25, 2012 at 7:39 pm #3240azawakhParticipant
How do you get your moons back?December 26, 2012 at 1:02 am #3257sarahdionnaParticipant
I have moons on my thumbs but no other fingers. I am glad that you are seeing improvements!December 26, 2012 at 9:38 pm #3259PrettytiredParticipant
I’m down to just ONE moon on my right pointer :(. Looking forward to trials!December 27, 2012 at 5:08 pm #3260blue129Participant
I lost my moons (except for my thumbs), and my nails are stark white except for the reddish streak across the tip. In fact, my nails are what helped with my EDS diagnosis. After 18 months and almost as many doctors, no one had a clue and then I subluxed my T6 facet joints. I remembered reading something about reddened cuticles being tied to connective tissue disorders, so I went back to that research and went down the list of CTDs–when I read about EDS it finally explained everything and voila! here I am :).December 28, 2012 at 8:46 pm #368
Anyone with chronic, “autoimmune” or neurodegenerative conditions may be prone to developing chronic fatigue and may lose the “moons” on their fingernails. Mine are BACK!January 13, 2013 at 6:35 pm #3339
How do you get your moons back?
I promise to explain it all soon! Did you lose your moons in your illness?January 13, 2013 at 6:39 pm #3340
I have moons on my thumbs but no other fingers. I am glad that you are seeing improvements!
Hi Sarah, How did your testing go? Oh, you may want to take photos of your moons now, so you can check for changes with medication as soon as I release the results. Sound good? EXTERNAL signs of our “invisible illnesses” are hard to come by! 🙂
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