Hi, I'm a newbie with a few questions
Posted 10 March 2010 - 08:49 AM
I was diagnosed with limited systemic sclerosis in December 2009.
I have been ill for several years. It started with an underactive thyroid, then I've had chronic bursitis of the hip for 5 years, IBS for 4 years, fibromyalgia for 4 years, last year I developed chest pains and breathing problems, I can hardly do anything without becoming severely out of breath. I also have lumber spondylosis.
Anyway 9 months and every test under the sun I had a diagnosis, not that I had any clue what it was or the implications of having this. I'm not overly impressed with the consultant who seemed to know very little and was a bit flustered and just seemed to want me out of there, she put me on steroids, gave me a leaflet about the tablets she was going to put me on in March and that was that, over in 5 minutes.
I've slowly been learning what I can from the internet but feel that talking to people who have this is going to be much more beneficial.
So I would love to hear all your good and bad experiences of living with this, my family and work colleagues have been very supportive but it's hard for them to understand what its like to live with this.
Posted 10 March 2010 - 12:06 PM
I think the scariest time was when I started having trouble breathing. It started out slowly over the course of a couple of years until I was to the point of being in the hospital in 2007 having a lung biopsy and heart cath. Then put on IV steriods (not sure what kind) for three days and then they sent me home on 100 mg of predinisone a day. I am finally off the prednisone as of about November 2009.
I have a good family and I had a good job. They did not want me to quit and said they would do part of my job for me if I stayed but I knew that would wear thin quickly.
I am glad you joined and I look forward to talking with you.
Posted 11 March 2010 - 04:31 AM
Welcome to the forum! You're in the right place for all things scleroderma, have a look around the site!
If you are unhappy with your consultant you may want to consider getting a referral to a scleroderma specialist. It's important to have a good rapport with your rheumatologist, particularly if you're paying for it.
Keep posting and take care.
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Posted 11 March 2010 - 08:20 AM
I'm so sorry you've been diagnosed with scleroderma. There is an awful lot to learn about it, but at least researching it keeps it interesting!
I'd agree with Amanda about finding a scleroderma specialist. It's a good idea to see someone who has experience and expertise in managing the disease and with whom you can have a good partnership.
We have good search engines on both the Forums and on the pages in the main ISN site; you can find them in the upper right hand corner of any page. One of the things I always do when starting a new medication is check it out here at ISN so I'm aware of things like side effects, whether the medication is a standard treatment, whether or not fellow members think it has been effective, and so on.
So, welcome to the site and keep posting.
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Posted 11 March 2010 - 09:28 AM
Welcome to this very helpful and informative forum although I'm sorry you've found us because of having Scleroderma.
I also have Systemic Limited Sclero with lung involvement but have been extremely fortunate in the treatment I've received which was at a top lung hospital and a top Sclero hospital. Like you I am on a low dose of steroids and also an immune suppressant with which I am having a slight hiccup at present but no doubt it will eventually resolve itself!!
I'm so sorry that you've got so many health problems at present; it is a little bit daunting to be diagnosed with such a bizarre disease at first but now I've got used to it I find that I can still have a reasonable quality of life with the added bonus of being able to bore everyone I know totally rigid with every minute detail of my illness!!
I look forward to reading your posts.
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Posted 11 March 2010 - 01:44 PM
Welcome to our family. I'm sorry to hear of your Scleroderma. It's always so frustrating when you don't have the confidence in your doctor that you should. Perhaps it would be best to seek another opinion. It's so very important to be able to communicate well with your provider, and have the feeling that they know what their doing!
Looking forward to knowing you better.
Posted 11 March 2010 - 07:23 PM
I also, would like to give you a welcome here to our family of folks who are very supportive, helpful, as well as caring.
I'm also very happy you found us and my hope is that you find a dr who is someone you are comfortable with, who answers you questions, to your satisfaction and gives you the time you need for proper treatment.
To be our own advocate, learning as much as we are able about our diseases, is very empowering!
Keep us posted as to how you are doing?
Posted 12 March 2010 - 04:51 AM
welcome to the forum. You will find great support and information here. There are several things I do to keep my quality of life in the positive range. One important thing I do for myself is to think of this as a disease not as an illness. This may seem like semantics, but thinking of myself as sick implies way more impairment than having a disease. Secondly, I try to do all the things I love to do. It may not be at the same level as before, but there are many things I can still do and enjoy. In some ways it has slowed me down a bit and a result of that slow down is more time to enjoys smaller details in life. Finally, find something that makes you smile or laugh every day. Even on days when I am in bed resting I can find pleasure in the cuddle of my dog, my chickens happily clucking outside my window or simply the sun light playing shadows on my wall. Life is good and there is so much more to do, even if the way you have to do it is different than you anticipated.
For sure this disease is a pain and can really hammer you at times. You will fare better with good supports in place and by all means find a decent doctor.