Newely Diagnosis " Crest" & waiting appointment in January

[Suziandscarlett]

Not all sunk in and frightened to death of what's going to happpen 😞

I have been reading about it & understand bits, but can this come on very quick ?

[alibon]

Hi Suziandscarlett, I was diagnosed with Limited Systemic Scleroderma (CREST) this year. At first I was frightened just as you are. I began looking on the internet and this made things even worse. Please stick to websites such as sruk.co.uk as they really do help and can answer any questions you have. I had my appointment with my Rheumatolgist in August and this put my mind at rest. Most people with Scleroderma start with Raynauds in their fingers and sometimes feet, but it doesn't mean that you will necessarily get all the symptoms associated with Scleroderma. It affects people in different ways, just stick to your GP and hospital appointments so they can monitor you and most of all, don't worry.

[Suziandscarlett in reply to alibon]

Thank you ,, that's reassuring! I actually went to my doctors ( different practice now) in 2011 with a worry about my symptoms of raynaurds & I visited 4 times to be told it was just cold to the hands , on one of the visits they put me on nifedine but never ever did tests to say I had raynaurds or. Secondary ,

I just got on with it after that ,,it's only this new doctor that did test as my hands are now swollen & im having ingestion x

[Wengc]

Hi @suziandscarlett, I was diagnosed with limited - my gp called it by its old name of crest- in November 2015. I am taking immunesuppressant medication, and largely am able to get on with life. I have to keep warm and moisturize my skin, and the do all the usual things : healthy eating, moderate exercise. I have learned to pace myself as I do get tired, but am still working. Mine seemed to come on in the space of a year, but has got no worse since I have been diagnosed and on the meds. I have found this forum invaluable for help and reassurance rather than searching on the web, which can throw up some worrying information. I hope this helps, good luck.

[Suziandscarlett in reply to Wengc]

Thank you ,, I am trying not to worry but it feels like things have come on quick & are getting worse ,, I think once I have seen the rheumatologist I will feel better as I will know where I stand .

[elizabethanera in reply to Wengc]

Hi, like you I have to moisturise a lot. Had to ditch a lot of expensive potions and lotions.am back to simple pink play which does not sting or itch. Finally think I got through a gp today, a new partner.no platitudes thank goodness, loss diagnoses like yours. Relieved in a funny way.just hope tests show up confirmation.does anyone have the granulated skin rash too? Driving me crazy!☺☺ Take care.

[Wengc]

Yes, the best cream I found is Diprobase the GP gives me a prescription for a big pump dispenser bottle...I've found it helps the itching and helps to soothe my tight fingers. I can understand how difficult waiting for the appointment is, I had to wait 3 months; alibon's advice to stick to this webpage is right, you'll learn a lot. When you see the rheumatologist take a list of questions and note the answers....I found my brain went completely blank...until I was on my way home, when all of the questions came flooding in! Take care..

[elizabethanera in reply to Wengc]

Hi, that sounds like me too☺