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mandyg

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About mandyg

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  1. Thanks Amanda, I will pursue it if it continues to be a problem - really don't think its "anxiety" as its not a sharp stabby pain coming and going, its just always there when I take a deep breath, worse in the morning - kind of takes my breath away first thing, if you see what I mean?! I haven't got my appointment yet for the PFT so I'll chase that up if I don't hear anything this week. Thanks again to you and Jo for your kind and wise words. Mandy
  2. Hi Jo, yes weirdly, it was a relief to finally get a definite diagnosis - at least I know now what I'm dealing with and can prepare myself, well as much as any of us can! Thanks again, Mandy
  3. Hi Amanda, I wonder if I'm not being treated for anything as my symptoms are only very mild at the moment - hand swelling and stiffness/tightness (unable to make a fist or do a thumbs up - never know when that might be needed :D ), Raynauds (which is actually quite severe but I'd rather just try to keep that at bay by keeping warm - got some lovely silver gloves from the Scleroderma clinic so I can have the odd Michael Jackson moment too) and the SCl-70 anti-body. It wasn't actually Dr Anderson who gave me the results of the scans - she didn't have them at my appointment on Wednesday as th
  4. Hi everyone, just a little update in case anyone is in a similar position and wondered what happens next! :) I finally saw the Scleroderma specialist, Dr. Anderson, last week and she was so lovely and really helpful. I had spent the last three months (whilst waiting for my appointment) finding out everything I could about this disease so I could be as informed as possible and I must have done a good job as I didn't really find out anything new, but she was very reassuring and told me that that I am in the early stages of Sytemic Scleroderma (didn't say which type - not sure if it's too ear
  5. Hi Amanda, thanks for your reply. The one thing I have figured out is that there doesn't seem to be any set pattern for how this disease affects people and everyone is different which I suppose is what's quite frustrating - not knowing what and when things might happen - if they happen at all! I also realise that I'm really lucky in that I seem to have been diagnosed quite early on (although that gives me more time to worry!!) I really appreciate yours and Jo's kind words - it seems I have it very easy at the moment compared to the two of you and, I'm sure, hundreds of other scleroderma suf
  6. Thanks so much for your reply; it's nice to know I'm not alone in this and these forums have been a great source of information so far. I will have a good look at the links you suggested and writing down questions is a good idea too (although I think writing down the answers might be even better as I have a tendency to forget everything I'm told the minute I walk out of the consulting room - that could be where my husband comes in handy!) Thanks again.
  7. Hello everyone and thanks for having me. I've been reading this forum for the past couple of months trying to understand this illness as much as I can, without, as yet, the benefit of speaking to a specialist and it has been really helpful so thanks for that! Please excuse me if I ramble, it's my first post so I'm not really sure how much information is needed so I'll try to give it all but be brief. I started with Raynaud's in Nov 2011 but about eight months later I noticed that my fingers were tight and swollen when I woke up in the morning. The doctor organised blood tests and xrays bu
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