Hello everyone and thanks for having me. I've been reading this forum for the past couple of months trying to understand this illness as much as I can, without, as yet, the benefit of speaking to a specialist and it has been really helpful so thanks for that! Please excuse me if I ramble, it's my first post so I'm not really sure how much information is needed so I'll try to give it all but be brief.
I started with Raynaud's in Nov 2011 but about eight months later I noticed that my fingers were tight and swollen when I woke up in the morning. The doctor organised blood tests and xrays but these came back "normal" so I was sent on my way. Earlier this year I noticed that along with the swelling, my hands were also going numb (even waking me at night sometimes) and I started to get pain up my arm into my shoulder so I returned to my doctor. She was a different doctor and couldn't understand why I hadn't had further investigations after the other tests came back normal (when obviously the swelling wasn't!) so she sent me for "specialised" blood tests. The results from these showed a positive ANA and ENA and also positive SCL-70 and the doctor was concerned enough to send me to a rheumatologist who I saw within a couple of weeks. The rheumatologist went through my history and told me that in her opinion I had Scleroderma. She gave me the Arthritis UK leaflet on the subject and told me not to google it (which of course I did!!), and sent me for an immediate chest x-ray and told me that I would also be going for an echo cardiogram on my heart and a CT scan for my lungs/chest. She also said I would need to see a specialist and would get an appointment in the next two or three months.
I have now been for all of the tests and have been called back for another CT scan as they wanted more images from a different angle, so I'm off to have that in a couple of weeks, then I have an appointment with Dr. Marina Anderson on 25th of September, then back to the rheumatologist on 30th September.
I have so many questions which I'm sure I will have answers too after seeing the specialist, but I would really like to know if anyone can tell me what will happen at that appointment? Is it likely that I'll be prescribed some form of medication or does that happen if and when symptoms arise? I'm really confused and I've tried to hold off asking any questions on here until I see the specialist myself but these have been the longest couple of months in my life!
Any advice or information anyone could give me would be really appreciated and I apologise if I've used the wrong terminology or have given too much or too little information and I promise to try better next time. :)
Thank you in advance.