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#1 LoriAnn


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Posted 25 May 2007 - 03:05 PM

Hi, I am new to this website and was on here for about 4-5 hours yesterday and I am scared to death. I was diagnosed in 06 with scleroderma. I have raynauds, dry mouth, mouth sores, hyperpigmation, skin darkening, some skin hardening on my hands, rosacea or what they call lupus rash on my face. My Rheumatologist recently told me that he thought I had diffuse systemic sclero. Being new to this disease I really didn't know what that meant, In reading and talking with others I understand that this is the most agressive type of sclero. My rheumatologist recently quit practicing and I can't get in to see a new one until Aug.

My rheumatologist. had told me that my headaches and dizziness were not related to the sclero, but in reading some of the personal stories, others seem to be having the same types of headaches and vertigo. I have recently been having a problem with swelling on the top of my foot. Does anyone with diffuse systemic have the same symptoms? Is diffuse systemic the worst kind to have?

I have found this website very informative. It is scary, but nice to know you can come here and talk to people who can understand.

Thanks for listening.

Lori Ann :)
Lori Ann

#2 Sweet


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Posted 25 May 2007 - 04:02 PM

Hi Lori Ann and welcome to the Sclero Forums.

I'm really sorry to hear that you have Sclero. I know when I was first diagnosed with Lupus I was scared to death, then came the Sclero diagnosis and most recently Fibro and Sjogrens. I think the most important thing I can say to you is take one day at a time. The more I learned and the more time I had to adjust to the whole thing the easier it was for me to deal with.

I'm going to give you a link to diffuse sclero for you to review in the event you haven't already read it. I'm also going to give you an link for emotional adjustment.
You will receive a lot of support here, just remember that.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 25 May 2007 - 04:46 PM

Hi LoriAnn,

Welcome to Sclero Forums! I'm sorry it's because you have scleroderma, but it's good you have found our support community.

It's normal to be upset upon first being diagnosed and learning about scleroderma. A rule of thumb is to keep an eye on it, and make sure that the period of worst tumult is over within two weeks. If it lingers and is still quite upsetting, then it's time to seek individual counseling (for development of more coping techniques, or for treatment of co-existing anxiety or depression).

By no means is diffuse scleroderma a pleasant idea, but none of the symptoms you've mentioned so far sound life-threatening. Even diffuse scleroderma can be nonfatal and of a more lingering nature. And rheumatologists aren't the be all and the end all for care, either. Comfort yourself with the idea that your primary care doctor (preferably a good internist) can diagnose, and treat, nearly any complication of the illness.

Particularly make sure you've had baseline screening for your lungs, and report any new symptoms to your PC for evaluation. Never sit on new symptoms, or even your worries, until the next rheumatologist appointment! For many people, rheumatologist. appointments are very few and far between (because there is a decided lack of rheumatologists in the U.S.)

I'm sure others will pitch in with ideas for how to ratchet down the stress level during this time. You can relax a little now, things will be better, because you've found a good resource for information and support!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 americanmike


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Posted 25 May 2007 - 05:20 PM

Hi Lori Ann--

Welcome to the board. Sorry about the diagnosis. Here's some things that will help you calm down.

1) Like Shelley Said, many many people have non-fatal very slowly advancing disease. Even Diffuse patients.
2) Everything you read about diffuse scleroderma makes it sound worse than it is. At least in terms of prognosis. The latest real data over the past 15 years say anywhere from 65-85% of diffuse patients will be alive at 10 years. Much better than the image of certain death in 3 to 5 years which is the dogma across the internet. Plus... this was 15 years ago, 10 years from now the advances in treatment should put these numbers much much higher.
3) Some people are being cured, and many many people have put their disease into a complete remission lasting 5 years and counting. There is incredible progress being done in the field of immunology and stem cell transplantation.
4) Your symptoms sound like you might have a mild or mixed type form of scleroderma, which has even better prognosis.
5) Many new treatments today are improving people's lives, and saving them. There are many options you will have today that people 10 years ago did not have.
6) This is not a fatal disease anymore. The new treatments, the cures, the complete remissions, the stabilizations, and the progress suggest you will eventually triumph over this disease.

Having said all this, of course it's a real bummer. But that fear of doom and death is just a terrible state of mind. It's so important to realize the statistics are in your favor, and that you are not doomed to progressivley get sicker and sicker and then die. That's just not the case anymore.

I hope you start to feel better (emotionally) soon and get a treatment plan together that will help you feel physically better.

Michael In Florida

#5 WestCoast1


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Posted 25 May 2007 - 06:05 PM

Welcome LoriAnn~
I am so sorry to hear about you diagnosis of Scleroderma. Your right, it is very scary to be dealing with this illness, but no matter how many stories that you read, yours will be unique to you....you may or may not experience some, none or all of the symptoms that you read about. Someone here reminded me to take it one day at a time, and that really made me feel better, I hope it does for you to.

We are here for you if you need support, or have any questions.


#6 jefa


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Posted 25 May 2007 - 10:02 PM

Welcome to the forums, Lori Ann. The others have said so much already, I am just going to say I'm glad you found us and hope you get us much support from the group as we all have. Join in on the various discussions and realise that you are not alone.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 nan


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Posted 26 May 2007 - 10:34 AM

Lori Ann,
Welcome to the forum! You have definitely come to the right place for information and support. I was diagnosed in December 06 with CREST(limited scleroderma). I also have Sjogren's and Fibromyalgia. When I was diagnosed with CREST and asked my rheumatologist the prognosis she said it was different for each person. I had all of my tests done for baseline and so far my digestive tract is all that is messed up. I have watermelon stomach- vessels in my stomach that bleed spontaneously. This very rarely accompanies scleroderma. So far that is the worst problem. I try to take a day at a time and I also try to laugh a lot.
take care,

#8 kelowna52


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Posted 26 May 2007 - 11:15 AM

Welcome Lori ann, I'm sorry to hear of your diagnosis. You have definately come to the right place. Everyone here is very supportive and helpfull. Just try to keep positive, there's so many advancements in medicine these days, it's amazing. Good luck to you and keep posting.

Jackie S.

#9 TJ903


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Posted 26 May 2007 - 01:28 PM


Welcome - take a deep breath and let go for awhile. There is so much love and support here - take some more time and read what others have to say and have experienced.

You are alowed to cry, get angry, get the 'pity me' and all of us here will support you 100%. It took me two months to get to the point where I could laugh about it. I wonder if the thread is still on here where we talk about all of us 'wobbler's' going out for drinks, and how funny we'd look. Alcohol would probably make us walk straight. This is the good kind of support and the day will come when you decide okay- enough is enough, how do I deal with this.

I was diagnosed with rapid onset, aggressive diffuse scleroderma Jan 4, 2007. It is a very scary, rollercoaster ride physically and emotionally. My Rodnan skin score is 26 which is really high and I've got lung, heart, kidney and esophageal problems so far. The good news, the involvement is not bad and there are treatments. Next week I start Cytoxan and I am still waiting to hear if I made the SCOT trial. My rheumatologist is talking to my insurance company for me, but they are very black and white and right now the answer is no. When anyone asks me - I tell them that I look like I've had a face-lift, my cellulite is gone and my boobs are perky again (well one of them is-I've had a mastectomy). My body is rock solid like I've been weight lifting again. HAHA - Took me a few months to get to this point, but the point is I DID. You will too with the help of this forum!

Too much information can knock you for a loop and like you've been told, not everyone gets everything. Have you had any tests done? What kind? Were you given your numbers? If you are like us, you want to know everything and you want to know now! See if there is anything you can do to get into see this other doctor asap.

My thoughts are with you - TJ

#10 CarriePan


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Posted 26 May 2007 - 03:46 PM

Welcome Lori Ann~
Sorry you have all this going on. I have limited, crest, other stuff happening with it. My handds and feet swell like all the time. My one ankle is always swollen and hurts. I've been losing weight, so that seems to make my bones a little better B)
Just to let you know...my cardiologist said she's going to have an intervention if I read too much on the computer LOL :lol:
Hope you are feeling a little more comfortable by being on this website.
Take care~
CarriePan :fairy: