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My next chapter

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#1 Jeena



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Posted 20 September 2013 - 12:26 PM

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.


Best Wishes


#2 Amanda Thorpe

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Posted 20 September 2013 - 02:29 PM

Hello Jeena


Your story made and continues to make me so angry! I knew reading your first post that you had systemic scleroderma and I don't have a medical degree! Perhaps you might ring that secretary back and tell her that you can in fact have scleroderma without Raynaud's and perhaps she would like to confer with Prof Denton if she won't take your word for it.


Perhaps you might contact the doctor(s) who said you cannot have scleroderma without positive blood work and explain that you can, citing yourself and others (me) to illustrate the point, they can watch this video about it as well. I have no doubt that many people who read your first post were shouting at their computers "you have scleroderma!", people without medical degrees but with experience of the disease something most doctors don't have and don't seem to be able to diagnose even with their medical degrees.


Sorry I had to get that off my chest, you don't have to do anything other than settle down and make yourself at home in our online community, I know no one wants scleroderma but having the diagnosis now means you know what you are dealing with. It also means you can get the right treatment, preferably from a scleroderma expert.


I have never heard of alemtuzumab being used to treat scleroderma, we have an article about it but it seems to be aimed more at multiple sclerosis. The first line of drugs used for scleroderma are often immunosuppressants such as Mycophenolate and Methotrexate as they are very effective with, on the whole, manageable side effects.


Armed with your diagnosis you could consider getting your referral to the Royal Free from your GP, it being the centre of excellence for scleroderma, there is no good reason to refuse your request. Under the auspices of the Royal Free you can then be sure you will be on the right medication and they will arrange your annual ECHO and lung function test, something you will have yearly for the first 5 years. It also gives you access to the Specialist Nurses who you can ring in between visits with any queries that arise about your disease or medication.


I also find it very interesting that you have negative blood work, mild Raynaud's and patches of morphea, well what do you know we're scleroderma twins!


You can probably guess I am very keen for you to get the right treatment by the right people but I will now stop banging on about it now and just welcome you to the weird 'n' wacky world of scleroderma!


Take care and keep posting.


PS I have sent you a private message that you can access by clicking on the envelope near your name at the top right of the page.

Amanda Thorpe
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#3 Joelf


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Posted 20 September 2013 - 11:23 PM

Hi Jeena,


I'm so sorry to read your post; it beggars belief that some secretary or other thinks she can diagnose whether or not you have Scleroderma. Perhaps if she was unable to offer you an appointment, she should have suggested you go back to your general practitioner and obtain a referral to The Royal Free from him. I was referred by the Brompton to the Free, so thankfully wasn't sent around the houses as you've been.


I would echo Amanda's good advice and go back to your doctor for a referral, so that you can be treated by a rheumatologist at the Royal Free who has knowledge and experience of this complex disease and who can ensure that you're on the correct medication.


Welcome to the Scleroderma Club; please let me assure you that it's by no means the end of the world! ;)


Kind regards,

Jo Frowde
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#4 Shelley Ensz

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Posted 23 September 2013 - 12:39 PM

Hi Jeena,


I'd like to congratulate you on finally achieving a diagnosis, as well as say that I'm sorry you have rheumatoid arthritis and scleroderma. It's awful to be sick, but even more awful to be sick and languishing without a diagnosis. It is horrible that it is an average of six years for systemic scleroderma to be diagnosed!  Unfortunately, its onset is different in everyone, not neatly predictable like many diseases, and when our body fails to read the medical textbook before getting ill, it can make quite a mess of the diagnostic process, as you've found out the hard way.


It really would be best if you could now get in to Royal Free for treatment. It would also be good for them to know how your initial inquiry was handled so they can perhaps consider revising their approach in the future. Not having Raynaud's may make it unlikely that a person does not have systemic scleroderma, as it is often one of the first noticeable symptoms, but not impossible

if other telling symptoms are evident.


Anyway, I'm glad you're back, but sorry its because you're diagnosed, and we all hope to hear more about your progress.



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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