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TOB

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  1. Hi again, I just telephoned my specialist as I have heard nothing back regarding my ENA (extractable nuclear antigens) and cardiolipin results. The secretary said 'if there was anything wrong the doctor would have phoned you'. She did then start to check and said 'your ccp and urine are fine', then she paused and said, 'all look ok but I will just run them past the doctor and if there is anything I will call you back'. I have had no reply so far! What bothers me is that at my last appointment my doctor just brushed aside my test results and the last ENA was postitive for SSA RO60 an
  2. Thanks to you all for your feedback and kind words. I went for my third lot of blood tests today which were anti-cardiolipin, ENA's and something else plus urine. I should get the results back on Friday or early next week so will keep you posted. In the meantime I will be looking for a scleroderma specialist or connective tissue disease specialist in my area, I am definitely not going back to the one I just went to! Regards, TOB
  3. Thanks to all for your kind words. In particular I wanted to ask Kamlesh whether you had SSA (RO60) positive or any other part of the ANA. I also have low positive cardiolipin tests and a positive (but not extremely high) Rheumatoid Factor. My most troubling problem is the acid reflux I have had for 6 and half years. I am on 2 nexium 40mg tablets every day and it is now getting to the point I still and feeling the acid. The acid actually goes right into my ear canal so the right side of my head feels fuzzy (like when you have a head cold in your ears). The acid makes me choke, it is da
  4. Hi all, I just though that I would let you know how I got on at my first appointment with the Rheumatologist last week. Well to put it bluntly he was hopeless and I am none the wiser! The consultant skimmed through my blood results (ANA positive Speckled Titre 640, Positive SSO RO60, RF higher than normal, Low Positive Cardiolipins) and just 'ummed and arrr'd' and didn't explain anything. He examined my skin and said there is no evidence of scleroderma as I have no skin manifestations. He then briefly examined me and listened to my heart and told me that I have a 'slight heart murmur'
  5. I feel deeply for all in Victoria and other parts of Australia who have been affected by the bushfires. I live in Sydney and feel ashamed of myself wishing for the heat wave to have continued. I moved from the UK 4 years ago and as a Raynauds suffer \ercannot stand the cold! I have been moved to tears over the last couple of weeks but have noted how the Australian people are so committed to each other and do not want to be overcome by anything. I seriously am in awe of their 'mateship' attitude and feel proud to have become a citizen on Australia Day this year. My thoughts are with all tho
  6. Hi again everyone, Well I have just received my second batch of blood tests back and have not idea what they mean! I am not sure if anyone on this site can give me an indication of what they are or relate to. Test 1 - Lupus Anticoagulant APPT 1:1 Mix 29.5 secs Dilute Russell Viper Venom Negative There is no evidence to indicate Lupus anticoagulant Test 2 - Anti-DNA 3.4 IU/mL (<7.5) Test 3 - Cardiolipin Antibodies Cardiolipin IgG (EIA) Low Positive 8 GPL (<5) Cardiolipin IgM (EIA) Low Positive 10 MPL (<5) T
  7. Thanks you all so much for your posts. It really is great to know that there are people out there to act as 'sounding boards' for newly diagnosed or those awaiting diagnosis. I definitely have Raynaud's but have not been tested as to whether it is primary or secondary. All I know is that today the weather in Sydney dropped to 21c degrees (it has been in the 30'sc for the last couple of days) and I had an attack of Raynaud's. I am sitting here now and my feet are freezing, time to get some socks on! Do you think I should request a nail fold test? Can this test determine whether it is Prima
  8. Hi, I am new to this forum and glad that I have come across it! I have been suffering from Raynaud's for approximately 10 years although I have only had it diagnosed this week. It was only through a friend that when discussing the effect of the cold on my hands, feet and nose, that my friend mentioned a relative of hers had Raynaud's. I immediately started researching on the net and concluded that's what I had. During my search I saw a link to GERD and this then linked to Scleroderma . I have had severe GERD for the past 6 years which started during my pregnancy. The more and more I read on
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