Worried New Member with queries about Scleroderma?
Posted 08 May 2012 - 02:17 PM
I am a very confused individual about my disease.
My name is Jenna and I come from Scotland. I was diagnosed with Scleroderma when I was 5. It started off as a white mark on my right cheek then seemed to fizzle out until I was 12 until then boom it resulted in black pigmentation marks (morphea, en coupe de sabre) appearing; this progressed until I was 17, where it has apparently died away completely. Then I sought the advice of a surgeon who has given me various fat injections to try and create symmetry to affected area (my eye, nose and right cheek were severely affected).Thankfully the fat injections have helped with the cosmetic issues, not perfect, but I was told that this would always be the case. I can accept this.
However I feel as if my Scleroderma is still present. Over the past year or so I have not been feeling myself and at first I put this down to maybe being slightly depressed about my appearance and operations in the past etc. I am however finding it increasingly difficult to carry out full time employment and I become very, very tired in the morning even after sleeping for 12 hours; I sometimes even find going to my local grocery store ( which is a two minute walk) a chore within itself and often feel out of breath even just for a pint of milk. Only a couple of weeks ago I was admitted to emergency care department and then referred to the neurology ward in Glasgow for tests, after becoming really unwell; symptoms included really tired I.e. the simplest of tasks becoming a chore, chronic sore heads and burning sensation of my feet and tightening of my chest on the right side and vertigo and being sick. I thought at the time I had just contracted a virus, but I am now reading apparently this can trigger scleroderma to come back. I underwent various tests, blood tests, MRI scan ( which found inflammation on the brain) CAT scan and I now have an oppointment to have an Echocardiogram and also a lumbar puncture. I do not have a great support network and feel sometimes as if my doctors do not listen I often sit alone in my flat pondering about these issues; this site has probably in some ways saved my life today. I am becoming very anxious about the possibility of my Scleroderma returning and was hopefully looking for advice?? What are the actual chances of my scleroderma (en coupe de sabre) returning since I had it in my teens?? I also have been experiencing some issues with my digestive system where I always seem to feel full after having a light meal and then I would always running to the toilet after having had my dinner. I thought at first it was indeed IBS but maybe that is too much of a coincidence, could anyone shed any light on this also??
Hopefully I will have some answers within the next couple of weeks. In the meantime, I must apologise for the rant but after going solo with this disease for 20 odd years I feel as if I need some advice and support.
Keep up the good work!!!
Posted 09 May 2012 - 11:54 AM
Here's a warm welcome to the forums and I am so glad you found us and hope we can help.
I have morphea, bullous morphea and diffuse systemic scleroderma, greedy me eh? My understanding is that localised scleroderma, being en coupe de sabre and morphea, do not develop into systemic scleroderma.
However about 25% of the time a person with morphea can have one or two symptoms outside of morphea such as fatigue and relux without it being systemic scleroderma. Only 2% of people are at risk of developing systemic scleroderma as well as morphea. It's only just dawned on me that I am in that 2%!
Have all the tests lined up for you because they can rule things out as well as in. You might also want to consider seeing a scleroderma expert, this list includes rheumatologists and dermatologists, usually morphea can be dealt with by dermatologists but systemic scleroderma is the remit of rheumatologists.
Before I go I have to say that I have no idea whether you are going to develop or have the systemic form of the disease but what I can tell you is that even if you did you can still live a good life, just a different one.
Take care and keep posting.
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Posted 09 May 2012 - 02:38 PM
Welcome to these forums!
I'm very sorry to hear that you're feeling so worried about the re-emergence of Scleroderma. As Amanda has said, it's very important that you do consult, if possible, a Scleroderma specialist as sadly many rheumatologists do not have the expertise to deal with this unusual disease. Unfortunately, many of our members have also felt that their doctors do not really understand the idiosyncrasies of such a complex disease, so you will find a wealth of help and support from them on these forums.
To give you a little more information, I've included links to Morphea and also Fatigue which includes one of Amanda's informative videos and our emotional adjustment pages. I do hope that you will find the advice on these links helpful.
I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading more of your posts and hearing how you're faring.
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