Just been diagnosed

Been given the diagnoses of systemic sclerosis and not sure of what to do or expect. Feeling shell shocked. I am showing some signs of the condition affecting my digestive system but very unsure of what I should expect or do next. The news came out of the blue as no doctor had hinted at this. Just been told that I will have 6 monthly monitoring and scanning but not much more. I have read a lot over the last few nights when I cant sleep. Any body got any advice as to what to do next?

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  • Hi,

    This group has moved to SRUK - I think you'll get better response in that forum :)

  • If you haven't already, try to get a referral to a scleroderma specialist. The SRUK website has a list. You should have benchmark testing such as Echocardiogram, ECG, lung scan, lung function tests, nail capilloroscopy, gastroscopy, barium swallow, blood work for antibodies, kidney function etc.

    My main advice is don't panic and don't believe the worse case scenarios you read about on the Internet! Also try not to stress! This disease can take different paths for different people and the tests help determine what treatment you may need. I was diagnosed with Limited Systemic sclerosis last year and am on no medication apart from Omeprazole for Gastro issues. Fatigue and breathlessness are my two worse symptoms. My best advice is try to get in touch with other sufferers. Since it's an uncommon condition, feeling alone was the hardest thing for me. Facebook has a supportive group called Scleroderma Family UK and I've met some lovely people. It helped me put things in perspective. SRUK are having their annual patient conference on Sat 3rd September in London. Think about going! Info on their webpage

    Here's some basic information patient.info/health/sclerod...

    Hope this helps

    Jan xx

  • Dear Jhay00.

    I'm sending you all my sympathies.

    What to do next?

    Go with the flow. Your life is changing.....

    Make sure you have a GP you feel comfortable with. If not, consider asking around to find one that is familiar with auto-immune diseases. You could ask the practice manager. Cultivate a relationship with your hospital consultant and their secretary. Consider asking your GP to refer you to the specialist Scleroderma unit under Prof Chris Denton at the Royal Free Hospital in London - they will help you with information and fine-tuning your treatment, and will help support your hospital consultant's diagnosis and treatment.

    Talk to people at the SRUK discussion forum. They are a great source of support and practical knowledge.

    With best wishes,

    Tim

  • Thank you Tim. I will follow up on your advice. I need to be proactive and take control and try and overcome the feeling of helplessness.

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