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About smanda

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  1. Mixed feelings - results!

    Of course Shelley, I don't know why I didn't think of that. I will follow others' stories and hopefully be able to offer input and advice.
  2. Mixed feelings - results!

    Thank you all again for your thoughts and wisdom. Just to answer a couple of questions .. I have had x-ray and PFTs, no CT scan My capillaroscopy was about a year ago (but Dr said it won't have changed within a year) I had another (negative) full immunology screen a week or so ago. The specialist has said today that my barium swallow report was apparently 'normal'. How I misinterpreted what the radiologist told me I don't know .. he pointed out the reflux and said my motility was slow for someone of my age. The specialist hasn't yet seen the LFT tests but said they were "excellent" from what I had told her - 105% spirometry and 82-84% diffusion. I have therefore concluded that I'm giving up on this. If my lungs are ok and I don't have any major symptoms that need treating (which thankfully I don't) then I'm going to forget about everything and just live with these odd (hopefully, non-life-threatening) symptoms. Thank you all again for helping me put everything into perspective. I hopefully won't be posting again. Gratefully Amanda
  3. Still negative ..!

    Hi ... good luck tomorrow Mona.. Let us know what he says. amandaxx
  4. Hi all ... Had LFT today .. not sure whether I'm relieved or not. Spirometry fine .. around 105% of predicted value. The DCLO was about 82-84% of what I should achieve. I know this is within normal limits but still have odd breathing and am not wholly convinced. My barium swallow showed some oesophageal dysmotility and reflux (lax LES). My sclero specialist will be coming back to me with her view of the results but she had wanted to discharge me completely. She is convinced I don't have anything but perhaps the dysmotility will make her rethink. I do find it hard to believe that this disease could be affecting my lungs when just 9 months ago I was told the odds of me having anything were virtually nil and of developing anything was unfeasibly low (based on having raynaud's, negative immunology and normal capillaries). What do you guys think? Is it common to have ILD without any other overt signs? Am I right in thinking that the disease would have been active for at least a year or so to cause any lung damage that I can feel? It started 6 years ago but went away and only started up again about 15 months ago. My ESR, CRP, C3, C4 are normal. I also have stomach problems, severe diarrhea and cramps on and off which is another worrying sign. No skin involvement that I can tell at the moment. Thanks for listening. I am sitting here with a perplexed frown on my face .. it's all so enormously confusing. Happy days to you all. Amandaxx
  5. Still negative ..!

    Thanks for your support .. I really do need it. I do have a sclero expert so I think I'm in good hands. I'll keep you updated. ax
  6. Still negative ..!

    Hi all I can't believe what is going on ... I have so many symptoms of connective tissue disease (CTD) but yet I still have had another full round of all 'totally normal' blood/immunology testing - something like 50 tests in all. I also excelled for lung function when I had a spirometer test. No wonder everyone thinks it's all in my head! Things are getting worse, burning, aches pains, reflux, cystitis, diarrhea, the strangest buzzing head, yet nothing shows up. It's almost like someone up there is having a good laugh at my expense and I'm beginning to question myself .. am I somatizing? But then I (sadly) remember the visible signs. I am booked to have Barium Swallow and proper lung function tests next week. Thanks so much for listening .. I suppose I just felt like 'twittering'. Smandaxx
  7. Hi all .. bit of an update on my search for an answer .. my ANA, ESR and CRP negative again, but sclero rheumatologist doing other bloods as well as lung function test and barium swallow. I feel pretty lousy though now which I hadn't been feeling before .. I have chronic sneezing not relieved by anti-allergy tablets and also, cystitis type bladder. I have blood in urine so doctor is checking further but I'm thinking interstitial cystitis as it's not the first time it's happened and I haven't had an infection. Does anyone have any advice on this and how prevalent it is. Thanks so much for your help. smanda
  8. Blood tests and capillaroscopy

    Thanks again Shelley for your wise words. The person I have been seeing specialises in Scleroderma actually so I feel I'm in best place really. It's just such a frustrating and lonely experience having symptoms and everyone thinking it's all pyschosomatic. I am booked to see the same sclero specialist again in a couple of weeks and have had ANA and sed/CRP rates done today so will let you know. Thanks again. Smanda
  9. Blood tests and capillaroscopy

    Thank you all for your advice. I am seeing rheumatologist in July and will let you know the outcome. Amandax
  10. Hi all ... I wonder if you can help me again with your experiences. I am a 40 year old female. I posted a year or so ago ... basically 6 years ago my fingers swelled and burned (and subsequently peeled along with my toes) I had tingling etc and some other mild, suspect symptoms of autoimmune style disease. My immunology then was negative and things calmed down bar the odd rash, tingling and strange numb spots. A year ago I developed Raynaud's on hands and feet after having another batch of different but tell-tale symptoms for 6 months - sore red face, cold all over, genital and oral ulcers, numb toe and burning fingers (particularly around cuticle area). I returned to Rheumatologist who repeated (at three month interval) immunology profile .. again everything normal. I also had a capillaroscopy - normal. I was then told I had less than a 1 in 500 chance of developing a disease given negative capillaroscopy and ANA. Great! Since then I have had problems with stomach and chest. My lung capacity is about 20% down on what it was. I have mild gastritis and slight laxity in stomach valve too (from endoscopy) which I understand is common in scleroderma. My voice goes sometimes (I can't raise voice without coughing) and I have a constant pressure in chest area through to back which I am thinking is a symptom of GERD, although I don't have indigestion as such. What I wanted to ask, has anyone had a similar experience to me, ie, 6 years on and all negative tests. I really want to believe them but I kind of know that something isn't right - that this is too much of a coincidence. I would believe it is all in my head if I hadn't had the Raynaud's diagnosed. I had "parked" my symptoms simply into the fact that I probably had mild UCTD which was unlikely to evolve. However, I am concerned about the chest involvement. Breathing just not right. Reading all your posts and responses I have found you all very inspirational and there is definitely a positive theme running through this forum which helped me to "park" my symptoms and stop worrying about it. However, I do probably need to see another Rheumatologist. Any insight from anyone would be greatly appreciated. smanda
  11. Still waiting ...

    Hi and thanks for your response. Did absolutely everything come back negative, all immunology results ... ANA, ENA etc
  12. Hi again .. I'm in the midst of a confusion of symptoms ... like many of us!! Recently I noticed that my forehead had a large indent in it .. at first I thought I'd slept strangely but it lasted for several hours or more into the day then resolved. I didn't think much of it but more recently I noticed the same area slightly lighter pigmented. Can this (the indentation) just come and go within hours like this? Is this just another CTD symptom or does it generally mean linear scleroderma. smandax
  13. Still waiting ...

    hi and thanks for response, Did you however have positive result to any of the immunology tests ie, ANCA, ENA etc. Or have elevated ESR or CRP. I am trying to be hopeful as everything (after 5 years) is still negative. I know something is going on but am trying to believe that perhaps it won't evolve as everything is negative and I am well really
  14. Still waiting ...

    hi all .. I don't know whether anyone can help .. you've all been great in the past. In short, 5 years ago my hands swelled and body tingled, my feet had severe pins and needles for a few days. I then had odd symptoms for a number of months .. nothing concrete. My lips were very red and cracked. Had all relevant antibody tests .. all negative. Things kinda went away for 4 years apart from odd things. Then about a year ago my face started going red for a few days at a time and stung. This was accompanied by terrible headaches and sore throat and general unwell. Went on 3 months. Then 9 months ago my big toes went numb and I developed raynaud's. My whole feet go blue and the toes blanch. My fingers and hands go blue too but haven't had blanching yet. I had another round of tests including ESR and immunology .. again all negative. I also had capillaroscopy .. negative for abnormalities. I now have general prickling sensations (mild burning) in body on occasions, I get small cuts and paper like cuts on fingers and have lots of ulcers both oral and down! On the whole I'm well .. I run and have three young children and am not hindered by anything. I do have the odd achey joint morning though and burning in clavicle area. Sometimes when it flares the underside of my forearms have red scratchy marks on them and they sting as they appear. My rheumatologist thinks I have primary Raynaud's as all tests negative. I would like to believe her but I don't know. Has anyone had all negative blood tests .. absolutely everything is negative but still have this disease or similar. thanks Smanda
  15. Can Anyone Please Help Me?

    Hi .. I was interested in the fact that your skin peeled. I haven't been diagnosed with anything but I first had an incident five years go when my fingers swelled and feet were sore and then the skin peeled on both areas. I also had lots of tingling and weird feelings. I forgot about it all until recently when it started up again ... no peeling but the arrival of raynaud's on feet and then hands. Lots of tingling and mild pain. I'm nearly 40 so a little old for primary raynaud's (but still hoping). I'm all negative for blood tests and no major pain so it's a waiting game for me. Never heard of anyone else with peeling skin. Take care Smanda