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#1 Sarah_Smith

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Posted 18 June 2010 - 06:00 AM

I'm 26, and when I was 14 I had some bumps on my hips biopsied and removed, they came back as Tumoral Calcinosis. Now when this all came back, the doctor reassured me and my mom that I didn't have cancer and that I was fine, never said the Calcinosis could be linked to anything else.

Fast forward to me at 16, all of my fingers on both hands except my thumbs are starting to bend toward my palm and I have severe pain and my fingers get cold and turn white when I'm cold. This scared me and my mom so we go to a general practitioner who does a lot of blood work and it comes back with me having juvenile rheumatoid arthritis (JRA). So we go to a rheumatologist who then does more blood work and an exam of my body head to toe.

Blood work comes back with a diagnosis of JRA and some other test showed high probability of Scleroderma and Sjogrens. All I was concerned with at the time was the RA since it was a positive that I had it. I had to stop seeing my Rheumatologist 2 years ago because I lost my insurance, but in that 2 years of not taking any meds or anything, nothing has gotten worse.

Now here is my concern. About a year ago, the bumps came back on my hips, and I remembered what they were called, so I started looking them up on the internet, and BOOM, always associated with CREST scleroderma. Then I discovered the Raynaud's and realized that is what was up with my hands when they get cold. I remembered my Rheumatologist saying something about this Scleroderma all those years ago, but he never said anything about the Raynaud's or the calcinosis being a part of that.

So now here I am, two years after loosing my insurance and no way to go to a doctor, researching scleroderma on the internet, which of course keeps telling me I am going to DIE from lung and heart failure withing the next few years. I am scared to death because I have 3 small children, and the oldest is only 9, with the youngest being 3. I don't want to leave my babies with no mother and I have no idea what to expect from this.

From what I have read, I don't think I have diffuse scleroderma, because like I said, the calcinosis was found 12 years ago and the Raynaud's started 10 years ago, and I have never had any skin issues or anything like that. Seven months ago when I started reading all this stuff online, I threw myself into depression and started having panic attacks, which of course led me to shortness of breath and heart palpitations, so of course I thought my lungs were being affected and my heart was failing.

So after several trips to the ER, two EKGs, four chest Xrays and a chest CT, all I was diagnosed with was Anxiety and a mild case of Pneumonia, who I saw a pulmonologist for. He said he was pretty confident that nothing was happening to my lungs at this point in time. But I am still scared. I get Medicare in July, so I will be able to see my doctor again after 2 years. So what I am wanting to know is, since my lab came back with a high probability for Scleroderma, and since I have these calcium deposits and the Raynaud's (which isn't bad, it hardly bothers me when I'm cold, never really hurts, and I haven't gotten the calcinosis anywhere else), does that mean I most likely have CREST? And since I don't have any skin involvement and I haven't had any organ involvement, is that a good sign?

All I want to know is if I am going to be able to watch my babies grow up. I want to make it to at least 46, then my youngest will be 23 and all my babies will be grown and I would have gotten to take part in making that happen. Would someone please take the time to answer some of this for me, because I can't seem to find anything but bad news online.

#2 janey

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Posted 18 June 2010 - 07:57 AM

Dear Sarah,

Welcome to the Sclero Forums Darlin'! I'm so glad that you took the time to give us some background and let us know what is going on with you. Sounds like you have been through a lot of tests and doctors and discovery over the years. It's not too uncommon to have both RA and Scleroderma. Both are "connective tissue diseases" along with lupus and polymyositis/dermatomyositis so many times you'll find overlap. I have both scleroderma and polymyositis.

I am not a doctor nor do I have medical training, so please verify what you read here with your doctors. CREST is a form of systemic scleroderm of which there are two main divisions: limited and diffuse. CREST is a form of limited. Please click on the link to learn more. CREST is less aggressive than diffuse but it is still possible to develop organ issues over the long term. Diffuse moves very fast whereas CREST usually moves slows and can become quite stable. Unfortunately, it never goes away.

I was diagnosed with diffuse 7 years ago. It was aggressive at first, but with good doctors and the right treatments it is now under control and relatively stable. As a result I plan to outlive my hubby who is healthy as a horse.

If is a very natural reaction to be scared, confused and quite stressed. If what you read on the Internet is scaring you, then quit reading it. As with any disease, it is important to take care of yourself and to reduce stress as much as possible. The more you enjoy life and your babies, the better you will feel and your health could possibility improve as a result. There are some members of this forum who have had scleroderma in some form for over 25 years! I plan to have it for at least 40 (I was diagnosed at 49). Gotta outlive the husband. :VeryHappy:

So Darlin' - hug your babies, laugh when they do funny things, enjoy your family and friends and enjoy life. That's the best medicine you can take right now. Please keep us informed on how you are doing. We're here for you.
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#3 Amanda Thorpe

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Posted 18 June 2010 - 08:02 AM

Hello Sarah

Welcome to the forums! My first suggestion is that you source your information about scleroderma from this site as a lot of the stuff on the internet is hysterical, as you have found out.

I obviously can't say whether you have limited scleroderma or not as I have no medical training nor could I say how your disease would progress should you be diagnosed. What I can say is that if you are it doesn't necessarily mean "game over".

I know people who have had sclero for over 20 years and counting, 15 years and counting, 10 years and counting... I'm into my 3rd year with diffuse and have just been diagnosed with myocardial fibrosis, thankfully it isn't currently active so as you see even having heart involvement doesn't mean "the end".

Others will join in with their encouragements so take care and keep posting.
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#4 Joelf

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Posted 18 June 2010 - 08:46 AM

Hi Sarah

Welcome to this helpful and friendly forum. :bye: In the beginning I too frightened myself witless reading all the scary stories about Scleroderma and Pulmonary Fibrosis on the internet so can understand how alarmed and frightened you feel. :(

Like the other members I also have no medical training at all (although that doesn't stop me trying to tell my long suffering doctor her job!! ;) ) so obviously I can't say how your disease will progress but I have Systemic Limited Sclero/ Polymyositis and I still have an excellent quality of life and can honestly say that despite lung involvement and joint pain I can do most of the things I always could, albeit to not such an intense level. :VeryHappy:

Trust me, Sarah, you will still be able to enjoy your family. :)

I look forward to reading your posts and hearing how you're getting on.

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#5 Catty

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Posted 18 June 2010 - 09:16 AM

Hi Sarah....the first thing I want you to do is to stop worrying because stress is not good for us. You said you did not have it in your lungs...that is a GOOD thing. I have had SD for close to 30 years now. Back then they did not have any med's for it at all so I took NOTHING except heartburn meds.
My symptoms were a lot worse than you sound like yours is hon...I am in remission now. I know you are scared sweetie especially having young children.
I also worried about the same thing but here I am still alive and my children are grown. Take life one day at a time...get up and enjoy life as much as you can everyday. Some of your days may be terrible then you will have many that are not as bad as others are. Stay away from stress...if you have people in your life that cause you nothing but trouble and grief....get them out of your life ...IF POSSIBLE. I had to do that myself.
Take care of YOU and your FAMILY. By the wway I have had over 15 operations for calcium deposits.
Good luck!
Shirley

#6 Snowbird

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Posted 18 June 2010 - 10:29 AM

Hi Sarah

I wanted to welcome you as well...sorry to hear you are so scared...but trust me, we've all been there and fully understand how you feel. I did that, surfed the net too...worse thing I ever did to myself, scared myself to death, unnecessarily I might add. A little tip = the very best thing you can do for yourself while you wait for your next appointment is to stop surfing the net and get all of your resources from this site/valid scleroderma organizations so you actually get factual information. You will find there is always someone in the know here and they are most helpful, it is a very good place to ask questions.

That's the thing with autoimmune diseases, no one can ever say what will or will not happen because no two people are the same. That's why it is scaring you so much right now (we always fear the unknown and it is overwhelming). Stress is really bad for any disease, or for anyone for that matter, so you need to do your best not to stress over what might or might not come your way (I know, much, much easier said than done but you can do it and in time you will) so try your best to take one day at a time, one thing at a time. It would also be good to make a list in the meantime of all your questions to take with you for the doctor.

Take care and ask away...
Sending good wishes your way!

#7 judyt

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Posted 18 June 2010 - 11:33 AM

Hi Sarah,
I am writing this post to tell you about me and to try to put your mind at rest. I believe the first symptom of CREST probably happened with me when I was about 11years of age. That is 55 yes FIFTY FIVE YEARS AGO!!! I am now 66 and going strong!! Well not strong exactly but I feel as well now as I have ever felt.

I have 2 grown children and 3 granddaughters, and I am expecting to see those girls all get married one day.

Take the advice that other people are offering you, stay calm, find a good Sclero Specialist if you can and don't read all sorts of rubbish on the net that will frighten you to death. I think it is really important to sort out with your doctor a good medication regime which keeps you feeling well and able to cope with day to day living, keep as fit as you can and take all the rest you can. I used to have to be in bed by 9.30 pm every night when my children were little because they were up at 6.30am and I would still need an afternoon rest if I possibly could fit it in. Once they were at school it was easier because I would rest for an hour after lunch before it was time for them to be home.

I tried being a working Mum from time to time but it was hopeless - I couldn't cope and in fact if you work at being at home you can cut down on costs quite considerably. You don't need flash clothes for a start!! Fortunately I love sewing and knitting (and in fact my main hobby now is Quilting) so I could make all their clothes and mine too when necessary.

From time to time I have had flares but right now I feel as if I am growing past the worst of it. It is a bit hard to tell because my medication is so effective now, but there is NO WAY I could be tempted to come off any of it.

Keep in touch with the Forum, I have found it to be the very best way t get sensible advice and support.

Warm Hugs from the other side of the world
Judy T

#8 enjoytheride

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Posted 18 June 2010 - 05:45 PM

Hi Sarah- I too scared myself silly with reading everything I could. Finally I just started limiting myself to a small amount of time every few days- I found during the times I wasn't reading all the awful things that could happen, my naturally more cheerful disposition came back into play.

I think for CREST to be diagnosed, you need to have three of the five symptoms. But even if that is true- this illness has a range of effects so a diagnosis does not mean the end. The things that get reported on the internet are the extremes usually- no University ever reports a case saying "Patient has almost no problems and doesn't really need me at all." No glory in that.

So do keep in touch- I hope that your doctor visits are positive. We would like to hear.

#9 Sarah_Smith

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Posted 19 June 2010 - 05:06 AM

Thank you all for replying. It all makes me feel a lot better. Today I am getting ready to throw a birthday party for my 9 year old daughter, and I am not going to let the stress and depression of all this get to me today, it tried this morning, but I am trying my hardest to ignore it.

I am having some shortness of breath right now, but I do believe that is because I have worked myself into another anxiety attack, because it is very easy to take a good, deep cleansing breath at any time during this attack, plus I am in the process of quitting smoking, so I have been coughing a lot the past week and clearing all the yuckiness outta me, and my mom says that that is gonna cause a little shortness of breath anyways.

I am going to take this all one day at a time. I called my RA doctor yesterday and spoke with his RN, and asked her about my chart and blood tests and what she thought about it all. She kinda laughed and said honey, you are just one of many we see everyday that have the same, or close to the same thing wrong, and you're not the first one to freak out and worry yourself sick. Then she told me that out of all of the patients they see, only a very small handful experience that nasty, awful things I have read online, and then she laughed when I told her I just wanted to make it to 46, and she told me that she saw me making far beyond 46.

So to know for a fact that the RA doctor sees others like me on a daily basis makes me feel better. I have an appointment with then on July 7, and I am so ready to go because I feel that once I get in and start seeing him, a lot of my anxiety will go away because I know I will have a doctor that knows his stuff looking after me and monitoring me. Like I said, it's the bad stuff, like the lung and heart involvement that scares me the most, so I will be happy to have someone watching over me and those things. Thank you all again, and I will keep you all posted on how things go for me. :thank-you:

#10 Catty

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Posted 20 June 2010 - 04:21 AM

Sarah, please stop smoking! PLEASE! That is the worst thing you can do for yourself. When you smoke a cigarette your blood vessels constrict, okay?

If you have Raynaud's you already have a problem with your blood vessels. You have no idea how bad smoking is for someone with scleroderma plus it is not good for your children to inhale that second hand smoke. Sorry hon, but I tell it like it is. Why? Because I care and I want you to get better for yourself and for your children. Listen to me now or else I will have to get even more assertive! :)

Catty/Shirley

#11 Jeannie McClelland

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Posted 20 June 2010 - 04:38 AM

Hi Sarah,

Welcome to the Forum!

I second everything everyone else has said. I was diagnosed 3 years, 8 months ago with systemic sclerosis sine scleroderma (no hardened skin) and pulmonary hypertension and pulmonary fibrosis. What a whammy~ But like Janey, with good doctors and appropriate treatment, I'm still here and plan to be for many years to come. I'm 63 and feel like I will definitely have a normal life span, unless I run into a bear when I'm out hiking some time. Besides, I want to see if my 2 year-old grandson is going to grow up to be as handsome as his daddy.

I've got one child (out of 4) who is still smoking and I'm going to tell you the same thing I told her. You aren't stupid, you know it can kill you in a lot of unpleasant ways. She doesn't have kids yet and my son-in-law says he doesn't want any until she has stopped smoking. I'm in total agreement. You've got a family - just think what a horrible example you are setting and how harmful your second-hand smoke is. Nasty smelling too. Years ago in the Europe there was a stop smoking campaign and they handed out buttons that said "Kiss a non-smoker - taste the difference." :P

So please, be a non-smoking scleroderma survivor! Otherwise Catty and I will take turns nagging you!

Warm hugs and best wishes!
Jeannie McClelland
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#12 jillatk

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Posted 20 June 2010 - 07:28 AM

Sarah,

Good for you for trying to quit smoking. That is probably one of the best things you can do for your health and yourself (and family). I have been diagnosed about a year ago and am feeling pretty healthy at this point. I have symptoms that are a pain and cause me to have to work around, but there is not a lot of things I can't do that I used to do. Yesterday I was able to go for a 12 mile hike (and I was not the slowest one). I obviously have to carry more clothes than others to be sure I can keep myself warm, but I easily made the miles and thoroughly enjoyed being out.

New treatments and medications are coming out all the time, so the best strategy is to take good care of yourself, keep in touch with your doctors and by all means, quit smoking. Enjoy everyday to the best of your ability, even if it a tough day. Find at least one thing a day that brings a smile to your face and gives you joy. Don't let the anxiety of what might be take away from what you have right now today.

Jill

#13 Catty

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Posted 20 June 2010 - 09:47 AM

Right on Jeannie! LOL...Between all of us here nagging her...maybe she will quit smoking....
We fuss only because we care! :emoticon-hug:
Catty

#14 bookworm

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Posted 22 June 2010 - 06:09 PM

Hi Sarah,

I'm 67 and going strong. I was diagnosed about 25 years ago and I am doing very well right now. I am on several medicines, including one for GERD, and I have good days and bad days, but the bad days usually aren't all that bad. Once your doctor gets you on some meds and your disease is under better control, you will be able to calm down and you will feel better for that alone!

I'm glad you are quitting smoking. I quit after 40 years as a smoker. I did it by joining an online group and it was wonderful help. There are some groups listed on this site somewhere. One of those is the one I joined. It's good to have some quitting support!

Hang in there!

Mary in Texas

#15 Amanda Thorpe

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Posted 27 June 2010 - 07:56 AM

The link to the quit smoking online support groups can be found on our avoid smoke link.

Take care.
Amanda Thorpe
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#16 Sarah_Smith

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Posted 29 June 2010 - 05:55 AM

Thanks for the link ^_^ . Today makes 1 week and 5 days without smoking...It has been kickin my butt, but I am getting there, it keeps getting easier with each day, and I have been using the gum for extra help, down to 2 pieces a day, so I am hoping that by the middle of July, I should have it kicked for good. I called my RA doctor the other day to ask him some questions about my charts and blood work from 2 years ago, and even though they had always focused on my RA, (thats all I thought I had for all these years), I actually have something called mixed connective tissue disorder, being a cocktail of RA, Sclero and Sjogrens. But he said that my crippled hands are from the RA, I have no tight, shiny skin anywhere, but I do have white patches on my knees and elbows and some on my hands, but they are not hard or shiny, so I don't know if that is from the Sclero or not. The only signs I have of it are my calcinosis, my Raynaud's and some tiny red spots on the palms of my hands, so when I go into him in July I am about to tell that man that he needs to plan on spending a lot of time in with me, because I have about 2 pages of questions for him to answer. :D

#17 Shelley Ensz

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Posted 29 June 2010 - 07:05 AM

Hi Sarah,

Major congratulations to you for every passing second of now breathing only fresh, healthy, invigorating clean air!! :jump-for-joy:

Since you are in high hopes of having a good sit down with your rheumatologist, an idea to consider (if you already haven't) is to check with their front desk to see how long your appointment is scheduled for. Many doctors (even rheumatologists) work on 10 or 15 minute segments for appointments, and particularly for usual follow-up appointments if they don't expect many new things to crop up. Longer appointment times are usually available upon request, but that's advance request so it doesn't throw their entire day off schedule.

My doctors are great at working with me for longer appointments, advising me how to schedule longer ones and even suggesting the best time frames for them. Often they prefer the end of the day for a long appointment so that I am the last patient. And I go with a list of priorities, so that if there isn't sufficient scheduled time to cover something, I know that at least my most important question(s) is answered, and I can make another appointment for the rest.

Sometimes we might think our doctors have a huffy or brisk attitude, where in actuality they are just trying to not do an hour long sit down when only a 10 minute appointment was scheduled. Plus, I have to say, I am shocked that most clinics give start times for appointments, but don't let us know the expected end time of it! So it really puts the burden on us to ask.

Good luck at your next -- long! -- appointment. :VeryHappy:
Warm Hugs,

Shelley Ensz
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#18 Catty

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Posted 29 June 2010 - 07:32 AM

We are so proud of you Sarah for quitting smoking! Hang in there with it hon...YOU CAN DO IT! :emoticons-yes:
Catty

#19 Sweet

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Posted 29 June 2010 - 09:03 AM

Sarah, congrats to you!!!! Sounds like you are well on your way to being a non-smoker! Keep up the good work! :happy-day:
Warm and gentle hugs,

Pamela
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#20 Amanda Thorpe

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Posted 02 July 2010 - 03:42 AM

Way to go Sarah! Once you stop totally you'll wonder why you smoked in the first place.

Take care.
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