Jeena

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About Jeena

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  1. 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 general practitioner 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. Best Wishes Jeena
  2. Thanks for your replies and sorry for my delayed response It's so reassuring to have this forum to express your worries and be safe in the knowledge of gaining sound advice from people who have personal experiences . Amanda it was actually your 'story' that led me to wonder if this was systemic scleroderma. I remember thinking how alike my symptoms were to yours in the beginning,especially about struggling to make it through the day at work. I have now been on sick leave over three months and I also relate to walking like Frankenstein's bride lol ! I viewed the video on sclerodactyly and my hands are so similar, the skin on my hands is fairly tight and very very shiny and is starting to spread slightly up my forearm . On the palm side of my hands the tendons feel very tight and the skin feels very thick and on the inner parts of both wrists the skin is taut, shiny and feels 'stuck' to the bones underneath. This is how the skin is feeling on my legs too and visibly seems to be extending from the ankles upwards and I also seem to have lost fat or muscle especially my lower legs. The muscles, joints and tendon involvement sounds like so many other people's experiences but I think it is the skin symptoms that I'm not sure about and don't feel I want to waste anyone's time if it is not scleroderma. I also have not been diagnosed with Raynaud's and am only experiencing mild changes to cold temperatures. However there is nothing I can think of other than this which was making me feel so ill and limiting my mobility in so many ways. I certainly do not feel the problems stem from my cervical spine and have no pain from there. Thank you Shelley for the advice regarding the steroids I have since discussed further with my general practitioner to discuss stopping them ,however the rheumatologist has discussed a possible diagnosis of eosinophiliac fasciitis (with my general practitioner, not me ) which would be treated with prednisolone so he would like me to continue until other tests have been completed. I have read the links on the site to see if my symptoms would match this diagnosis but basically feel more confused than ever. The steroids have actually made a great improvement to my mobility and eased most of the pain. I am still left with the contractures in my hands and arms and still a lot of stiffness in my knees and ankles. I am going to take your advice and still request a referral to a scleroderma expert and will let you know how 'my story ends ' Thank you and best wishes Jeena
  3. Morning All Just thought I'd share the outcome of my recent appointment with my rheumatologist. Since I last posted my joint pain continued to increase and my mobility deteriorated due to stiffness in my knees and ankles. I was having major difficulties getting up and down stairs and following an Occupational Therapy assessment was provided with several aids to help around the house. My ability to attend to my self care needs also deteriorated and I have been needing more help from family with dressing ,drying hair, etc. This has been made worse by what I think is a joint contracture in my right arm as I am unable to turn this palm side up (sorry if this sounds confusing ) I can no longer reach behind my back with either arms and my wrists continue to be stiff and rigid and my fingers swollen and curled. When I saw my rheumatologist on Monday I felt at a very low ebb and quite physically exhausted due to continued fatigue and disturbed sleep. I was so looking forward to getting nearer a diagnosis but left feeling bitterly disappointed. As I mentioned in my first post, the rheumatologist initially felt my symptoms were due to degeneration in the cervical vertebrae and while the MRI scan confirmed osteoarthritis in my neck, I was seen by two physiotherapists who felt my symptoms did not account for this and a detailed report was sent to the rheumatologist and a suggestion of some form of connective tissue disorder. At my recent appointment the rheumatologist gave me little opportunity to speak up and after a quick examination concluded he continues to feel the problems are from my cervical spine and is referring me to a neurosurgeon for nerve conduction tests. I queried whether scleroderma was an option but he stated no as there was nothing showing in my blood results.He did not look at my skin and I have since developed very shiny skin on my hands arms and legs and possibly mild Raynauds (fingers are reacting to even minor changes in temp but going purple not blue). Anyway to conclude what was going to be a quick update, I have been prescribed prednisolone 15mg daily and lyrica for pain. This is my third day on the steroids (not taken any lyrica) and there is definitely major improvement in pain relief and loosening of my joints even in my fingers. I guess my main concern is that this medication will mask my symptoms and prevent a diagnosis if it is not my neck. I am considering paying privately for a consultation with one of the experts from the list and any thoughts or advice would be much appreciated. Really sorry for the long post! Best Wishes, Jeena
  4. Thanks for your replies I have had a further appointment with my general practitioner who feels my fingers are curling due to tight tendons rather than tightening of the skin and wants me to see the rheumatologist again before considering any other referrals. I will let you know the outcome. Best wishes Jeena
  5. Hi Everyone I have only recently found this site and am finding the information really helpful. I am 54 and was diagnosed with morphea by my general practitioner a couple of years ago when I developed a large oval patch with lilac edges under my breast followed by a couple of others on my trunk. I had already suspected this was the diagnosis after looking up my symptoms on the web and readily accepted the reassurance that it would clear up in time and no treatment was necessary. Over time more patches have developed all on my front and back plus one patch on my inner wrist. Some of the patches are really itchy and general practitioner has given me some steroid cream to apply which has had some limited effect. However late last summer I also developed a lot of joint pain plus fatigue. I had a number of routine blood tests plus an antibody test which were all within normal range. Since then the joint pain has increased especially in my arms and hands . I am no longer able to straighten fingers or make a fist and my fingers are painfully curled all of the time. I am also unable to bend both wrists and my lower legs are painfully stiff and my toes feel similar to my fingers. It has also become difficult to stand from a sitting position and my joints stiffen if I stay in the same position. Night time is especially painful. My general practitioner referred me to a rheumatologist who initially felt the problems were due to trapped nerves in my neck however an MRI scan has now ruled this out and I am awaiting a further appt. I am just wondering if any of my problems could be related to the morphea. The rheumatologist was not really interested when I told him I had this. Any thoughts or advice would be greatly appreciated. Thanks and best wishes..