Posted 11 November 2011 - 12:21 PM
I've joined today, having been recently diagosed with limited cutaneous systemic scleroderma with secondary Raynaud's. I also have automimmune underactive thyroid. I've had Raynaud's symptoms for as long as I can remember but only went to the general practitioner at the end of last year as I had been struggling with my job as a medical secretary. The general practitioner did various blood tests, upped my thyroid medication, because my thyroid was out of control and referred me to a rheumatologist because my blood results were abnormal and he wasn't sure what the results meant. I first saw the rheumatologist in April and had a follow up appointment last week. The x-rays and blood tests done at the first appointment revealed nothing serious but last week the diagnosis was confirmed. The rheumatologist does not think I have active scleroderma at the moment but I have an echocardiagram and respiratory function tests booked for the end of this month as a baseline, and will be monitored annually.
I've found silver gloves helpful for the Raynaud's and have eye drops for dry eyes, which the rheumatologist said was part of the scleroderma.
I'm looking forward to learning and sharing on this site.
Posted 11 November 2011 - 02:53 PM
A warm welcome to these helpful and friendly forums!
I'm sorry to hear that you've been recently diagnosed with Limited Scleroderma and Raynaud's. and also that you have an underactive thyroid which unfortunately does often seem to go hand in hand with Scleroderma. I've put in a few links for you which I hope you'll find interesting and informative and also another to Sjogren's which will give you some more information about the dry eyes with which you're suffering.
Are you seeing a Scleroderma specialist? I expect as a medical secretary you can understand the importance of seeing an expert and we do recommend that you consult one if possible as sadly many general rheumatologists do not have the knowledge or expertise to deal with this complex and unusual disease. It does sound as if your general practitioner (like mine!) was on the ball and has arranged for you to see a rheumatologist to run some important tests to keep a very close eye on how the disease is progressing. Although I also suffer with Raynaud's, I've never actually tried the silver gloves but I know we do have other members who've used them with good results.
I'm very glad that you've found our forums and joined our community and I'm looking forward to reading more of your posts. Do let us know how you get on with your echocardiogram and lung function tests.
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Posted 11 November 2011 - 02:56 PM
Welcome to the forums and the weird 'n' wacky world of scleroderma! Well now you know why you've been struggling at work, which must be a relief, not to struggle but to know why. I have diffuse scleroderma, diagnosed 2007, that's still very active and retired my in 2008 at the age of 40!
If you ever want to meet up with other people with scleroderma the Scleroderma Society hosts local groups around the country and you don't have to be a member of the Society to attend. Make contact with Liz Holloway, their local group coordinator and a member of this forum, for more information.
Take care and keep posting.
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Posted 12 November 2011 - 04:30 PM
I also have Limited Scleroderma (Systemic Sclerosis), with secondary Raynauds and another autoimmune disease called Sjogrens Syndrome, which manifests itself with fatigue, dry eyes, mouth and vagina. Are you seeing a Rheumatologist who is specialised in Scleroderma? If not this would help as the symptoms can be manifold and not all rheumatologists are used to dealing with Sclero. Don't know where you are located but if within striking distance of London I can recommend the Royal Free Hospital rheumatologist team as they are specialists in the field and can help with advice and support.
I also wear silver gloves and use heated inserts in my gloves to ward off Raynauds attacks and to avoid further digital ulcers.
Hope to have been of assistance.
Best wishes.and keep warm
Posted 12 November 2011 - 11:29 PM
Thanks for your welcome and also for the links, which I will look at.
The rheumatologist I'm seeing is not on the list of specialists but does seem to know what he's talking about. I'm still learning about the scelroderma and will certainly bear that list in mind. The specialist nearest to me would either be in Addenbrookes or Northampton.
Posted 13 November 2011 - 07:27 PM
I too have Limited systemic sclerosis with Raynaud's and Hypothyroidism....I think the 'Lynn's' are becoming the favourites to have this disease haha; so glad you found us on the site and you will continue to share and post and share your journey with the rest of us great people on here. I for one would be lost without their support and friendship so a very warm welcome to our 'family'.