Systemic Sclerosis

[Sunnycats]

Hi
I've had a blood test come back with Anti-centromere antibodies and a CRP level of 18.
Several months ago I started with knee pain, then double shoulders pain,and now my wrist to the point self care is hard.
Went for MRI on the knee initially as presumes meniscus tear and it was thought the rest was linked.
A physio got concerned and ordered blood tests, and I spoke to the GP about the results (above). I'm absolutely terrified of what this means.
I have Raynauds in my feet but otherwise I'm 48,super healthy and happy.

I don't understand this at all. Google is terrifying me about shortened life expectancy and all sorts.

Does anyone have this? I'm waiting to see rheumatology but am falling apart at the moment and just would love to talk to someone who lives and manages with this.

Please don’t panic and stop googling - I speak from experience!

I don’t have Systemic Sclerosis but do have some overlap features of it with another rare autoimmune disease and I totally understand your fear and worry. Being a rare disease doesn’t help either as it leaves you feeling very much on your own, but once you get some answers and know what you’re dealing with, you’ll slowly start to come to terms with it and the shock/fear factor will abate.

I’m hoping that you won’t have to wait too long for Rheumatology but in the mean time you could try posting on the autoimmune section on Mumsnet or Healthunlocked.com forum which I find helpful or even speaking with the Scleroderma and Rynauds uk charity.

Hi I have systemic sclerosis and have been diagnosed for 14 years. The disease is different in every person so it's very difficult to give you any kind of prognosis but I can give you practical advice.

1- Go on SRUK website and find a specialist near you. Very few rheumatologists know how to treat SSC correctly, so this is absolutely essential. If you are in the South, the Royal Free hospital in London and Prof Denton are considered the best of the best. He will see NHS and private patients. If that's too far, don't worry, I'm in the North East of England and have an excellent rheumatologist. Your GP or current rheumatologist can refer you to your chosen specialist, you just need to ask.

2-Stay away from Google. The info is super confusing. Join SRUK and Health unlocked. Both are excellent British based forums( A lot of stuff online is American oriented and they have different treatment pathways)

3-Make a list of all the questions you need to ask your consultants. Ask them to send you summaries of your apps out in writing and Google specific things you won't understand/take in from your meetings. Keep all your medical notes and learn as much as you can from your support groups. You will need to advocate for yourself in the future as very few doctors have heard of SSC. ( I find saying to baffled people that it's a disease similar to Lupus, as most people have heard of Lupus and SSC does share many similarities )

4- Get ready for lots of tests. You will have multiple tests on pretty much every body part as your journey continues

I hope this helps. I'm happy to answer anymore questions here or on PM.

@Openthisdoor thank you for your reassuring words and advice. I'm taking some time to process and have managed to stay off Google since posting this. I've been quite weepy but realise it's going to take a while to figure things out so need to be mindful of that and stop the downward spiral.

@Ashipcalleddignity thank you for taking the time to share all that information with me. I spoke to a volunteer on the support line at SRUK which was really helpful.

I will remain hopeful that my appointment for rheum comes soon and in the meantime will be doing everything I can to look after myself well.

Thank you both again. I was in a bad state yesterday and you both really helped

@Sunnycats I’m so pleased that it helped even if just a little.

Please look after yourself; eating well, rest and sleep are so important as are gentle stretching exercises if that’s all you can manage, just to keep some mobility - it’s so easy to seize up! And most importantly, keep that stress at bay (haha!).

Always here to chat 😊