Sugarplum Fairy

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About Sugarplum Fairy

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    Greece
  1. Hi there. This is me reporting after 1 year plus after my initial post in case there are other stressed out people looking for answers. I did push for futher examination and went to a university lab this time, one of the most reputable nationally. My lab results all came back normal (Ro, La, Scl-70, ACA, RNP etc.) except from the ANA titer, it was 1:160 speckled once again. That was back in August 2016. My eye pain disappeared too; went to a top eye doctor to sort that out as well. Indeed it was the stress talking for me; I lost both of my parents that year. A friend at work has scleroderma; I managed to learn and see with my own eyes what it feels and looks like. She is a wonderful, most courageous individual and overall she feels and looks great, bless her. And bless you all for the support. I wish you all a delicious autumn.
  2. Hi guys, I was just wondering about something else.. is skin tightening / itching considered one of the initial symptoms as well? How does the skin tightening sensation feel exactly? I've had a couple of spots that itch me but not terribly (above the eyebrow area and the scalp). Comes and goes..
  3. Will keep monitoring my symptoms. Thank you so much for everything.
  4. So sorry to hear about your pulmonary fibrosis Jo. Hope you'll feel better soon! I was just wondering, if you guys experienced finger pain prior to the sclerodactyly stage? Do fingers hurt before swelling and curling? Is it a rapid process?
  5. Hi girls, thank you so much for the speedy replies! Your cool, calm and collected attitude and your informational advice means so much to me. A couple of days ago, the Greek Society of Rheumatology held an awareness event for World Scleroderma day in the centre of Athens (Sydagma sq.) so I decided to go and have a look. Sadly, the rheumatologists seemed totally unfazed and upon discussion they only offered me a couple of pamphlets and bade me farewell, chalking up my symptoms to stress, looking forward to grab a bite from the local food canteen. I've learned so much more from Sclero.org, NYT articles and the Johns Hopkins Scleroderma section. @Shelley: what does pulmonary fibrosis look like? My fingers feel a bit swollen (fingertips) but they aren't - this summer my skin has become increasingly sensitive towards synthetic polymers - my Ηavaianas suddenly feel unbearable - makes my skin red. @Jo: thank you for your kind words Jo, my parents' situation is non reversible and it breaks my heart because they're both youngish. I want so much to be around to see my child grow up. I'm looking for a defence to uncertainty which is an unattainable task.
  6. Hello! Congratulations on the fantastic job you've been doing on scleroderma. It is hard to locate cross-checked information over this illness in my country and I've learned so much just by browsing forum topics and the site's main categories. My heart goes to everyone out there. I'm cutting straight to the chase: I'm a designer who has started working as a waitress in a restaurant the past 2 months to make ends meet and I'm undergoing through terrible stress because both my parents are gravely ill and my child is 3 years old. I have been experiencing a problem with my eye since February - at first it was accompanied by horrible migraines so my general practitioner ordered an MRI scan that came out clear as a bell. I've got astigmatism so I just started wearing my glasses more often and the horrible headache was gone, although the slightly burning sensation in my eye never left - I tried artificial tears that didn't do any particular difference, it always affects one eye. I've also experienced shooting pains on my right arm and performed a cervical MRI which showed various herniated discs and bone spurs at the ripe age of 35. The ortho doctor ordered a couple of detailed blood tests to put my mind at ease because I was complaining for rheumatic-like pains (knee pain mostly). The blood tests were good (normal CRP & ESR rate, negative Anti ds-DNA, negative RF, normal C3& C4 component levels etc) BUT my ANA came out positive 1:160, speckled pattern. That was around April '16. My September '15 ANA panel was negative. Of course I started googling away the pattern result and scleroderma appears to be in the list of possible diseases associated with. Since then, my arthralgia-like pain has been more intense and recently fingers and knuckles are in pain with no evident swelling. I've got combination skin on face but rest of the body is mostly naturally dry / sensitive and my rosacea is in full bloom. I've visited 3 rheumatologists and a dermatologist and everybody dismissed my symptoms and associated them to stress. They keep telling me that half of the healthy population out there has a positive ANA panel and I shouldn't fret about it. A couple of weeks ago, I had another blood test, my ANA seems even higher (1:320, speckled pattern) whilst everything else remains perfectly normal.. All doctors seem totally indifferent about the rise, they prompted me to perform further testing myself at a big hospital lab and avoid private labs.. They told me that if I insist I could perform further evaluation (Anti-Smith, Anti-RNP, Scl-70, Anti-La, Anti-Ro, ΑCA), it costs around around £90 and I cannot afford it so I'm basically driving myself crazy with self-diagnosis. I just wanted to know, if you guys feel I'm just worrying too much? Overall my symptoms are the following ones: general malaise, stinging sensation on one eye (same eye always), pain in fingers and knuckles with no swelling and no pain when joints are being pressed; my index fingers feels as someone has crushed them, awful burning sensation on my arms and the top of my hands, calluses on right palm, my skin feels sensitive and sore and area around the mouth feels sore as well.. Never experienced Raynaud's, no ulcers, no evident tightening. Do these symptoms sound anything like scleroderma? I hope I don't sound totally insensitive and silly towards people with genuine symptoms.. I just don't know what to do with myself. Thank you for your patience.