Newly Diagnosed - newly scared
Posted 02 December 2010 - 02:24 PM
I'm a 34-year-old woman just diagnosed with Scleroderma. I've been dealing with Raynaud's since my early 20's, and just recently saw a rheumatologist when some regular bloodwork came back with a sky high rheumatoid factor. The first rheumatologist told me I had MCTD, but he referred me to another specialist who specializes in Sclero and the 2nd doctor diagnosed me with Sclero, with Sjogrens and Raynauds.
I don't know how to feel emotionally. I've been dealing with Raynauds for so long, without ulcerations, that I figured it was tolerable and manageable. I do have the dry mouth and eyes of Sjogrens, but I've been dealing with it by artificial tears and plenty of water at hand. I don't have skin issues yet, just some dryness at my fingertips that I can't alleviate. I do break out in hives and suffer from occasional migraines, but that's really it. But now that I have this official diagnosis...I feel scared. I'm not on any medications and living a normal life at this point, but does this mean things will eventually get bad? Do I have to brace myself for a long and difficult road ahead? I read somewhere that Raynauds is the first symptom and that after a couple of years, the Sclero hits hard and fast - but that hasn't happened to me. I guess I'm trying to find out if anyone has had a similar story...or any words of advice/comfort.
Thanks - I'm so grateful this site is here.
Posted 02 December 2010 - 03:01 PM
Welcome to Sclero Forums. I'm sorry you have scleroderma, but you have certainly come to the right place for information and support. There's no standard progression of scleroderma, so no, it doesn't automatically mean that you are going to get horribly worse. Generally speaking, if the disease onsets slowly, it tends to stay nice and slow, and sometimes even stop in its tracks, and occasionally even reverse itself. So I think you'll find plenty of folks who have a fairly quiet but somewhat meandering experience with it.
Anyway, here are some hugs to welcome you and help you get settled in.
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Posted 02 December 2010 - 03:27 PM
Welcome to the Forum!
What did the scleroderma specialist say? Did he give your variety a name? There are so many different types of scleroderma and each has a different prognosis, in general. There is even a type that doesn't have any skin thickening (systemic sclerosis sine scleroderma). Everybody seems to have a different experience and even within types progression isn't assured. (Lots of 'differents' there!) It makes for a lot of uncertainty, but once you learn to deal with that, life can get back to normal.
I've just celebrated my 4th 'anniversary' with scleroderma and have to say, the major impact it has had on my life has been pretty positive. Weird, eh? One of these days the medical literature will catch up with the reality and newly diagnosed won't be scared so badly. In the meantime, places like this forum and the main site of the ISN are great. Lots of reliable information, lots of new friends who've been there and done that. Lots of silly jokes and a fair amount of humor about life as a Sclerodermian.
Join in the fun!
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Posted 02 December 2010 - 04:15 PM
Very sorry to hear that you have Sclero, but more sorry that you are scared. My first episode was in 1966 or 7 when I was 22 or 23!! I am now 66 and none of those really scary things have happened to me. The only skin issues I have had has been sclerodactyly which is just tight skin on my fingers from the first knuckle to the tip, along with very strange and uncontrolled cuticles.
My Raynauds and migraines were the most bothersome really - I had a migraine at least once a week from 1966 until I was given Amlodipine in 2003 to control the beginnings of blue fingers and ulcers.
Last year I was diagnosed with Pulmonary Hypertension but that turned out to be from Mitral Stenosis caused by Rheumatic Heart Disease, and has been treated.
The other most troublesome part of my Sclero has been a bowel prolapse along with esophageal dismotility. I have had several surgeries over the years to try to help the rectal issues which are really hard to put up with but not life threatening.
I have severe vascular incompetence in my legs which requires me to wear support stockings every day, and I do get ankle ulcers occasionally. I would get ulcers more often I think if I did not wear my stockings every day without fail.
So, my experience is quite different from lots of others, but I had a slow onset at a young age and I wonder if that is affecting the severity. Other people posting here talk about a sudden and severe onset at a later age.
The things I am thankful for mostly is that because of my disease I am watched very closely by my doctors, I suspect I would have developed bowel cancer long ago, because every time I have a check up in that area they find villous adenoma which would have eventually developed into a tumour.
My Rheumatic Heart disease would not have been discovered and treated until it was much worse and I suspect my friends would have got fed up with my lack of energy - whereas now they just accept that I can't do lots of things they can.
So, take heart, take your medicine if any is prescribed, take care of yourself and we can all hope that you will continue with a relatively mild progression of your disease.
Lots of hugs from downunder in NZ
Posted 02 December 2010 - 04:39 PM
One of the real issues with this disease is that it is so variable. It can surprise you with what happens but also with what doesn't happen. I spent a great deal of time when I was first diagnosed worrying that every little twinge meant something awful. It didn't.
I actually feel pretty good at the moment having been put on medication that really helped.
If you have any questions, please feel free to ask here. We will talk about anything and usually there are people who have experienced something similar and can give you perspective.
Posted 02 December 2010 - 10:14 PM
A warm welcome to these forums!
I'm so sorry to hear that you're feeling very worried about your diagnosis of Scleroderma. It can feel very scary and isolating to find you have an unusual and complex disease but now that you have joined this community you will find that you are no longer on your own and there will be plenty of new friends on these forums to reassure you.
As the other members have said, there is no particular course to this bizarre disease and it does seem to vary a lot from person to person. I have Limited Sclero which has primarily attacked my lungs, but I also, like you, have Raynaud's so can empathise with you over that (it's not helped by the Arctic conditions we're suffering at the moment!! )
The very best thing about having this weird disease is that I have met some really lovely people, whom I wouldn't have known had I not joined the exclusive Sclero sufferers club!
Do please post often whenever you feel the need for reassurance or a little light hearted banter to lift your spirits!
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Posted 03 December 2010 - 11:57 AM
I'm sorry you are scared. That is very common with this uncommon disease. Try not to read too much of the bad stuff that can happen, while at the same time keeping yourself informed. Use this site for information and support. Enjoy the good in life, and experience whatever you can with joy in your heart.
Posted 03 December 2010 - 01:35 PM
@Jeannie - Unfortunately, my sclero specialist didn't specify the kind of sclero. I'm going to call him to see if he can specify.
@JudyT - I have uncontrolled cuticles on one hand - but I'm glad to hear your migraines are under control - I've had mine under control since I've started taking capsules of Turmeric on a daily basis. I haven't had a migraine in months! I've had some heart palpitations as well - so I will be having an echocardiogram very soon - I didn't realize the heart can be affected by sclero.
@enjoytheride - very true. I've spent the last week hyper-aware of every twinge, every ache, every blemish and of course my poor neurotic brain spins away!
Anyhow, this has made it very clear to me that I have to take care of myself - first and foremost. Which is really what everyone should be doing...but for some reason it's so easy to neglect oneself. I 'm going to work hard to take of myself physically yes, but also spiritually and emotionally. And although I'm still scared, this will not define me or hold me back.
Thanks again for the encouraging words!
Posted 04 December 2010 - 09:47 AM
Welcome to the forums! Interesting about the rheumatoid factor, mine is normal even though I have diffuse systemic scleroderma with heart involvement! Blood tests aren't everything obviously.
I'm with Jeannie about the positive impact of scleroderma, it is what you make of it so you might as well make the best of it.
Take care and keep posting.
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Posted 04 December 2010 - 10:04 AM
Welcome to the site,You have got it spot on when you say you will not let this define you or hold you back.
I agree with everything that has been said so far and I hope that with time you will become less scared of this disease. I think it is fair to say that most of us on this site have felt the same initial fear that you are experiencing now, it is only natural when faced with something so life changing, but it does get easier with time, especially when you realise the chances are you may not get everything you read about.
Take care and keep posting
Posted 04 December 2010 - 01:31 PM
Welcome to the forums, glad you found us. You have been given great advice from others. I would add to build yourself a strong support network. It can make the more difficult days bearable and keep you focused on taking good care of yourself. I was diagnosed about 2 years ago, and after getting on the right medication regime, I am back to being active and healthy. I was even able to climb a 14,000 foot peak in September, which my doctor said I would no longer be able to do. The trick is to keep doing what you love and work around the things that don't work like they should.
Posted 04 December 2010 - 11:23 PM
I see you have already received lots of friendly advice. My little bit is not to read everything on the internet, it is the worst place to go...and unfortunately the first place we seem to run to, bad move!! Try to take it one day at a time and one thing at a time. It's a little harder to do that at first because of the overwhelming thoughts that keep running through your head. I know it's hard to believe but that will also settle down for you too.
I'm sure you will find this site to be all you need. It is a great place to ask all your questions but best of all, you will receive solid factual answers from people who really know.
Looking forward to chatting with you more.
Posted 06 December 2010 - 07:15 AM
Welcome to the site. I know it is very scary. I am still scared, because you do not know really the progress of this condition. But I have learned in this group that if you follow up with your doctor, take your meds, ask all the questions needed with a positive mind and attitude you grow out of the scary part. This group is amazing,we have information and people that understand. So again welcome and keep us updated.