TOB

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Everything posted by TOB

  1. 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 I discovered that symptoms that I have are extremely similar to scleroderma sine scleroderma as I have no skin disorder. Other than Raynauds and GERD my symptoms are dry coughing, shortness of breath on exertion, heart palpitations, carpal tunnel syndrome and fatigue. I also suffer with frequent bowel 'rumblings' every time I eat which often leads to having to run to the bathroom within half an hour. I had some tests done last week and I received the results today. I was positive in ANA (speckled patter titre 640) and also in ENA SSA (RO60). I was negative in ENA Scl-70 which my doctor told me is prominent in scleroderma. She told me that my results were more common in lupus and is now doing further tests (ds DNA,cardiolipin etc.) My issue is that my symptoms appear to be so close to scleroderma and not very close to Lupus. Don't get me wrong, I don't really want to have either, however, I am worried that the sclerodera is going to be overlooked. I also understand that the GERD could be completely separate issue and not related to scleroderma, however, I can't seen this symptom for Lupus. I wanted to reach out and ask whether anyone has had similar test results to mine but has been diagnosed with scleroderma. I will have my second set of results tomorrow and have to see a rheumatologist. Has anyone had a similar experience? All feedback would be welcomed. Many thanks
  2. 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' When I questioned whether that is the reason I have palpitations and shortness of breath he said, 'it could be but I often see this problem in slim people as you can hear the heart much clearer!'. He then got me to move arms and legs to see if there was any stiffness. I told him that I get carpal tunnel in both wrists and on waking I am quite stiff. He told me that I needed to exercise more and look at my posture. I work out 3 -4 times a week so am not sure what else I can do! He then mentioned that there could be a possibility of 'mixed connective tissue disease' but then in another breath he told me that he doesn't think I have anything and 'not to worry'. He then asked me if I suffer from dry eyes and mouth which I told him I don't. He then said that 'well you will probably get it in the future'! He mentioned Sjogrens but didn't actually say he thought I had it!!!! I don't really have any symptoms of Sjogrens other than Raynaud's and gastro reflux. I then questioned why my ANA test had a titre of 640. He said he wouldn't worry unless it was 'off the scale and up in the 200's'. He told me to imagine in the blood lab when the guys there are testing the bloods in the rows of test tubes (he sat there with his hand on his head doing the actions of adding the stuff to the test tubes) he then went on to say that quite often the guys in the labs add double to the test tubes as they lose concentration and that's possibly why my result came out higher!! You can imagine that I just wanted to cry and get out of the room as it wasn't worth asking any more questions. He also told me not to believe in everything you read on the net! He asked me to make another appointment to come back at the end of May as it is winter here in Australia and he can then discuss ways of managing Raynaud's. Having said all that he has ordered some more ANA/urine/Anti CCp antibody tests which I was pleased about but I am very tempted to ask my general practitioner if I can get a second opinion. Sorry to ramble on but I feel so frustrated. Of course I don't want to be diagnosed with anything but I just want to ensure that the test results are thoroughly investigated. I would be interested to see what you think about my positive ANA at 640 and positive SSO R060 and if you think this is in the higher bracket. Can there be nothing wrong with me but still have that lever of titre? Thanks for listening!
  3. 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 and Cardiolipin was 'Low Positive' for both tests. I have now made an appointment to see my general practitioner next week, she will have a copy of the results so I can go through them with her and then request to see another doctor for a second opinion. I'll keep you posted!
  4. 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
  5. 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 damaging my throat and more often than not now I am getting burning in my chest. The rheumatologist told me that it could be completely separate from Raynauds and nothing to do with a connective tissue disease. I still think that with my positive ANA and other positive results something must be going on. It would be good to hear of any other symptoms you are suffering. For me it's also irritable bowls (diagnosed with IBS several years ago) shortness of breath, palpatations (rhemo mentioned he heard a slight heart murmur!) coughing on exertion. I also get a very tight feeling in my chest when I do cardio excercise. I am fairly fit am 161cm tall and weigh 50kg so weight is definitley causing the shortness of breath or palpatations! Please excuse me for rampling but it is just good to get this off my chest and to see if I can find anyone else with similar results to me that has been diagnosed with sclero. Many thanks, TOB
  6. 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 those that have perished and their families, friends and neighbours.
  7. 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) Test 4 - Serum Complement Fration Complement C3 0.96 g/l (0.84-1.84) Complement C4 0.18* g/l (0.20-0.59) So the first test appears to be negative, the second test seems ok as it is less than 7 but the 3rd test is Low Positive. Does anyone know what this means? Is it a positive normally found in Scleroderma. If anyone has any guidance on the final test, that would be great. There you go, that's me all blood tested until I see the Rheumatologist in April for the first time. I am sooo anxious to know what's going on, what all the positive tests mean and whether my rheumatoligist is going to be clued up on scleroderma, lupus etc, etc! I just wish we didn't have to wait so long for a diagnosis. I will keep you posted. Thanks again.
  8. 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 Primary or Secondary Raynaud's? I forgot to add yesterday that apparently my Rheumatoid blood test had come back higher than normal too. I don't have any joint pain but do feel very tight in my muscles, has any one else had the same result back? Jeannie, can I ask what other tests you had to confirm the sine scleroderma? Our symptoms sound very similar. Do you also suffer with irritable bowels after eating and bloating? I haven't had any lung tests yet but had an ECG last week (I happened to have palpitation whilst at my general practitioner) and my ECG was regular but the beats per minute were raised. I am awaiting the other tests I mentioned in my previous post and they aren't due for another few days. I have booked an appointment to see the Rheumatologist that my general practitioner recommended but can't get in until April. My general practitioner has given me another name so I am going to try her to see if I can get an appointment soon. Although I feel fine (other than the constant GERD) I am just really anxious. Can any of you recommend any tests I should request or questions I should ask the rheumatologist? I am quite a quite person and often take the answers from doctors as the end of the line. If I get a rheumatologist that isn't familiar with scleroderma or states 'it's so rare' I want to be string and push back. I just want to be thoroughly tested for scleroderma and my symptoms are so close and the symptoms of Lupus and Sjogrens (is that how you spell it!) are so different. Thanks again for all your great replies. I just feel very anxious and want to just get to the bottom of it all. I will keep you all posted. Many, many thanks to you all.