So sorry for not updating my post earlier and for not acknowledging your responses which I really appreciated. Life has been such a rollercoaster these last few months and I kept hoping I would soon have something concrete to tell you so I kept putting off posting anything.
However I finally have a diagnosis and compared to a lot of posts I have read this may have been reached a lot more quickly than most but to me it seems such a long time.
Since my last post I did take heed of the advice you kindly offered (G P reduced the steroids quite quickly for me ) and I tried to get an appointment at the Royal Free. This however proved to be quite difficult and I was told by a pleasant but unhelpful Secretary that if I did not have a definite diagnosis of Raynauds then there was no point in a consultation as I would not have scleroderma .She asked where I had gained the contact and when I started to explain she interrupted and said not to take any notice of the internet!
I therefore discussed further with my GP and he agreed to refer me to the regional hospital to see a scleroderma specialist if my rheumatologist continued to insist that my problems were due to my cervical spine. So following a range of nerve conduction tests, EMG studies and a spinal assessment the rheumatologist eventually agreed I may have a connective tissue disorder but it could not be scleroderma as my blood results were negative!
He agreed to a referral to see a specialist in connective tissue diseases and following many further tests etc. it was concluded that I have Systemic Sclerosis overlapping with Rheumatoid Arthritis. During the time I had waited for the diagnosis my condition continued to deteriorate and thankfully I have no internal involvement but have contractures in wrists, hands, elbows and ankles making mobility and life very difficult. I am now waiting to start treatment with alemtuzumab and although I have read the information on this site, I would like to hear from anyone who has tried this treatment and what their experiences were.
So sorry for the long winded post but it has helped to write this down as coming to terms with this diagnosis has not been easy. Also wanted to share with Amanda that all my blood tests have also been negative and I too only have very mild Raynauds, interestingly I also started with a couple of patches of morphea. Anyway thanks for reading and thank you for this forum.