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 they had been done at a different hospital, but I had a follow up appointment with a rheumatologist at that hospital today so he gave me them. When I asked him if he was sure the CT scans were clear as I was having chest pain, he looked at me a bit oddly like I was making a fuss so I didn't want to push it any further. Didn't want him to think I was a hypochondriac! He also said that I would probably be scanned every two to three years in the future which worried me a bit. Then he asked if I wanted to be signed off as his patient as there didn't seem to be much point in seeing him AND Dr. Anderson, especially as she is the specialist in this field and I agreed. (Dr. Anderson said they would keep a close eye on me so hopefully that means scans a bit sooner than two to three years!!) If the pain is still there at my next appointment with Dr. Anderson in three months, I'll make sure I ask her about it, although are there any further tests that can be done anyway? If the scans say my heart and lungs are ok, they must be ok? Been having quite a bit of indigestion over the last couple of weeks too which I have never, ever suffered with before but hopefully it's just a co-incidence?! Sorry for the ramble - once I start, I can't seem to stop! :blush:
  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 early to tell yet although I have SCL-70 and the Raynauds only started quite recently so I suppose that points more to diffuse?) and that I don't need any medication at the moment, but I will be very closely monitored and have another appointment with Dr. Anderson in three months time. She gave me numbers to ring if I had any questions and sent me for another whole load of blood tests (ten tubes!! Ten!?) and an EKG (think that's what it's called - apologies if that's wrong - the heart trace thingy where they stick little stickers on your body and check your heart rate?) and she's also made an appointment for me to have the nail fold capillary test in a couple of weeks. I had to see a different doctor for the results of my previous scans and tests (chest ct, chest x-ray and heart echo) and I was a bit anxious about the results of these, as over the last couple of months I've been having a bit of pain in the chest area when I breath in deeply, especially in the morning when I wake up, and also find I've been getting a bit more out of breath when I'm walking than I have in the past. But apparently all of the tests have come back clear so I'm a bit puzzled about that. The doctor said the chest pain could be due to stress, so hopefully it'll disappear now! :) Anyway, that's where I'm up to in my little Scleroderma journey - just trying to get my head around what's coming next, but at least I know that when something does come up, it'll be caught early and I can get on with getting it sorted! Thanks for listening and hope you are all having a good day, Mandy
  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 sufferers. Who knows what's around the corner - I suppose I just need to make the most of feeling fairly healthy at the moment! Thanks again and I'm sure you'll be hearing from me with further worries and questions and hopefully good news when I get the results of my tests at the end of September (had the first chest x-ray in the middle of June - goodness, it's a long time to wait to find out if it's clear!) Thanks again, Mandy
  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 but these came back "normal" so I was sent on my way. Earlier this year I noticed that along with the swelling, my hands were also going numb (even waking me at night sometimes) and I started to get pain up my arm into my shoulder so I returned to my doctor. She was a different doctor and couldn't understand why I hadn't had further investigations after the other tests came back normal (when obviously the swelling wasn't!) so she sent me for "specialised" blood tests. The results from these showed a positive ANA and ENA and also positive SCL-70 and the doctor was concerned enough to send me to a rheumatologist who I saw within a couple of weeks. The rheumatologist went through my history and told me that in her opinion I had Scleroderma. She gave me the Arthritis UK leaflet on the subject and told me not to google it (which of course I did!!), and sent me for an immediate chest x-ray and told me that I would also be going for an echo cardiogram on my heart and a CT scan for my lungs/chest. She also said I would need to see a specialist and would get an appointment in the next two or three months. I have now been for all of the tests and have been called back for another CT scan as they wanted more images from a different angle, so I'm off to have that in a couple of weeks, then I have an appointment with Dr. Marina Anderson on 25th of September, then back to the rheumatologist on 30th September. I have so many questions which I'm sure I will have answers too after seeing the specialist, but I would really like to know if anyone can tell me what will happen at that appointment? Is it likely that I'll be prescribed some form of medication or does that happen if and when symptoms arise? I'm really confused and I've tried to hold off asking any questions on here until I see the specialist myself but these have been the longest couple of months in my life! Any advice or information anyone could give me would be really appreciated and I apologise if I've used the wrong terminology or have given too much or too little information and I promise to try better next time. :) Thank you in advance.