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About Madusa

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  1. Madusa

    Scared and emotional before diagnosis

    On Saturday I was rushed to A and E again, this time with bleeding from the bowel and total loss of control of my left leg, it would hold my weight but refused to move. After an horrendous three days in hospital where no one would take me seriously and them falsifying records I was discharged. Today I went for my appointment with the rheumatologist. I had done my research and wasn't expecting great things, I was wrong! I was scheduled for a 30 minute appointment, I came out 1 hour and 30 minutes later, he listened, asked questions, examined and gave me what he stressed was an initial diagnosis, mixed connective tissue disorder with arthritis. He wants to to undergo more tests and is looking at referring me to Hope Hospital who have more experience in this area. He explained that the diagnosis could change depending on what other symptoms present themselves. It was good to be listened to and not be fobbed off
  2. Madusa

    Scared and emotional before diagnosis

    It took me an hour to write my post on here, my hands can't use a computer so I have to use a tablet with a stylus......it was the best hour I have spent. I woke up this morning and felt better than I have done in months, the swelling is still there but my joints don't feel as stiff today. I don't know whether its because I final put down in writing what has been happening or that we have a little bit of sunshine here. Thank you, thank you, thank you for being here to reassure and advise on a practical level. To be honest I had looked through quite a few posts on the site before I joined and have found a scleroderma specialist local to me in Salford if I need them. I had a bad experience several years ago going for every test under the sun at the hospital to find out why I was suffering from sea sickness to be told it was all in my head, I changed my doctor and he ordered a blood test (my last general practitioner didn't think of that) to find out I was severely anaemic and I had hypothyroidism. Due to this I want to be as prepared as possible before my appointment to enable me to be in control as much as I can. I have found out a lot from all the collective wisdom that is on this forum and I would like to once again say thank you to each and everyone for not just being there and replying but for posting and enabling people in my situation to feel reassured
  3. Hi everyone,I have not been diagnosed by a scleroderma specialist yet and until I went for a routine check up in February had never heard of systemic sclerosis. Back in September I started suffering with aches and pains in my joints, overdoing it at work I thought so took pain killers and got on with life. Then in November I started with chest pains one afternoon and by evening had been rushed into hospital. After x rays and monitoring and blood thinning drugs, I was let home 3 days later. I then had ct scans, stress echo cardiogram and more x rays and an appointment with a cardiologist in January, it was 2 days before this appointment that I had my first Raynaud's episode (my mum had it so I knew what it was). The cardiologist diagnosed me with vascular spasms with Raynaud's, put me on tablets and told me to see my general practitioner in a month. When I went to the general practitioner in February for my blood pressure check he noticed I couldn't straighten my arms and mentioned scleroderma and refered me to a rheumatologist, of which I have an appointment in April, 10 days and counting. I went back to my general practitioner a month later and he noticed other worrying symptoms so tried to get me seen earlier so off I went to the hospital the next day, waited 4 hours to be seen by a doctor (not a rheumatologist) he took one look at me and said Systemic sclerosis took bloods and said to wait for my appointment with the rheumatologist. I am now in so much pain with either my joints, tendons or muscles, I can't tell which. I have swollen feet, ankles, knees,hands and fingers, trouble swallowing and walking. My elbow joins have got so bad I can't feed my self properly, bathe or undress without help.I feel as if my life has been suckered out of me. Has anyone else had symptoms come on so rapidly and were you as scared as I am feeling right now.