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#1 kaurie

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Posted 26 March 2009 - 10:10 AM

Hi everyone. I am new to this site but I am not sure where to go just to talk about what is happening to me. I'm not sure where to start but I am a 32 year old female with a family history of lupus and rheumatoid arthritis. When I was 7 years old my ANA came back positive but the RA factor came back negative. So the doctors still assumed that I had rheumatoid arthritis. At the age of 12 I was seeing a rheumatologist and he said the same thing but this time with symptoms of lupus. Then my so-called arthritis went into remission for some time. I never was tested for lupus and have been wondering for some time. I finally went to the doctor and instead of doing a lupus panel on me they did an ANA panel on me and instead of being positive for lupus, I was positive for scleroderma.

I was lost for a few days trying to put this all together. I have had a constant rash on my legs for 2 months now, my skin is not hard, but for the past few years I have had bad stomach problems, swelling off and on, and a history of acid reflux. For years the doctors just diagnosed me with irritable bowel syndrome, duodenitis, and acid reflux disease. I guess it would all add up with everything now. I am still waiting to get into a rheumatologist to have more tests done. But I have been driving myself insane doing all this research on this. Then I finally found this site where I can talk with people who are actually going through this. I guess my question is, what kind of tests will they do, where would I go from there, and how long can a person have this? I'm still trying to add it up since my ANA was positive since I was 7 years old. so many questions and I have no idea where to begin. If you have any advice, please I would love to hear it along with any answers you can give. Thank You.

Kaurie

#2 Kathy D

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Posted 26 March 2009 - 10:51 AM

Hi Kaurie,

Nice to meet you though sorry you are here too.

I also drove myself insane researching on the internet, I was warned against all the surfing by my hubby, father, and rheumatologist, but could not sit by. It's been about a month now since my positive SCL-70 test and I do not have the desire to surf for sclero anymore.

The further testing ordered for me was to evaluate my organs, lungs, heart, kidney and liver.

Glad you are here, I have found so much support. :)

KD
Diffuse Scleroderma Diagnosed March 2009

#3 Jeannie McClelland

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Posted 26 March 2009 - 11:03 AM

Hi Kaurie,

Welcome to the Forum. I'm sorry to hear you've been having difficulties getting a good diagnosis and having health issues. You've come to the right place, though. Hopefully we can provide some good, reliable information as well as understanding friendship and support. Your story is a familiar one - most of us have had similar experiences and I'm sure you'll get to know us well. Ask anything you want and we'll all try and help.

How long can you have an autoimmune disease? Some people have had symptoms and a diagnosis for years, others have had symptoms but no diagnosis (also for years), some people have a rapid onset of symptoms and get a quick diagnosis. It varies wildly, as does the presentation of the disease itself. To make things even more complicated, you can have more than one autoimmune disease at a time. Everybody is different and that can make you crazy when you really want a definite, cut and dried, no if's, and's, or's or but's answer! (See the gray in my hair?! :lol: )

As for the kind of tests you can expect when you see the rheumatologist, that will depend on the doctor and your symptoms. You can pretty much count on a lot of blood work though. (We have a page on Diagnosis.) In my case, because my major symptom was shortness of breath and a dry cough, the first things they did were pulmonary function tests, chest x-ray and CT, a couple of different kinds of echocardiograms, etc. Because you have a lot of GI issues, you might get referred to a GI specialist for a consult.

Where do you go from here? That's really going to depend on the results of the tests, I guess. Treatment is tailored to the individual symptoms. We're none of us here doctors and can't offer a medical opinion, so we have to go by our collective experience. Many of us, at one time or another, go on an immune system suppressant and/or some sort of anti-inflammatory. I'd be willing to bet, oh, the cost of my next super-luscious designer coffee (that's a lot of money!) that everybody takes something for the GI issues.

Don't scare yourself reading everything out there on the subject, Honey. Even if it is good information, it might never ever apply to you. Stress is always bad for us. So take deep breaths, relax, and keep us posted. We'll be waiting to hear everything!

Best wishes and warm hugs,
Jeannie McClelland
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#4 kaurie

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Posted 26 March 2009 - 12:15 PM

Thank you for the welcome. As of right now it's a waiting game with the rheumatologist. I have to drive 2 1/2 hours to see one and they haven't called me to schedule the appointment yet. The one closest to me wouldn't have an appointment until September and I can't wait that long. I am glad there is a lot of support here. Unfortunately, my family is in denial and won't talk to me about it yet until I have further test. I guess that is a good thing though. I don't want to have to go through the what ifs yet.

Kaurie

#5 kaurie

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Posted 26 March 2009 - 12:30 PM

Unfortunately I do not know how long I have had this. My ANA was positive but no diagnosis when I was 7 and retested at the age of 12 and was positive then as well. I finally got my results on Wednesday, March 18, 2009 and they were SCL-70 positive. Funny thing is, it was a nurse practitioner who said my ANA was really high and she didn't understand what it meant so she walked out of the room to consult with a doctor, then came back in and told me my results. She also told me some of what it was and that she was going to get me a referral to a rheumatologist. I was expecting to go in telling me that I had tested positive for lupus. I didn't know what to say or ask so I left and came home and googled it. Now I have all these questions going on in my head that I really want answers to now but I guess it's just a waiting game. I am still not sure what all to ask when I do see a rheumatologist. So if you have any questions that you think that I should ask besides some of my own, please let me know. I am going to be going to my doctor tomorrow due to the bad swelling in my stomach that started 2 days ago. So hopefully I will know something about that tomorrow. I am really glad I found this site. I finally am able to talk to someone about this and I am glad that I am not alone. Thank you so much for welcoming me and for the advice. I am very grateful.

Kaurie

#6 Jeannie McClelland

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Posted 26 March 2009 - 01:20 PM

Ah, Kaurie, I really am sorry you haven't had more sensitive treatment. I was among the fortunate few to land early on at a center of excellence that not only knows about autoimmune diseases, but takes great care of their patients emotionally as well as physically.

My family were also in denial and some of them for a long time. As you say, that can have its benefits. I think one of the pages I kept going back to was Emotional Adjustment. There are a lot of topics on the page that are really helpful and some of them may help you to help your family.

I've ended up with what some might call a bizarre sense of humor (be nice, folks). When I told my husband, I said something along the lines of: "Honey, you know how Doctor Blissfully Ignorant said I had asthma and everything would be just fine if we got rid of the dogs? Well, great news! We can keep the dogs!" Learn to laugh - a sense of humor is better than any pill.

So what to ask when you see the rheumatologist? Well, first, ask for a confirmation of the diagnosis. Secondly, does he or she have any experience with the disease? Does he or she have any other patients currently? Then I'd give him/her a nicely organized list of symptoms (incl. duration and severity) and ask what can be done to treat them. Ask if any other tests are planned. (I'd ask for his bank account number or credit card details, myself...) Ask what plans there are for routine follow-ups. "Call me if you have a problem" is not the right answer.

Having said that, there may not be a lot of questions the doctor can answer right away. One of my first ones was "what's my prognosis?" His answer was "You'll do as well as you do." Deary me. But it turns out that since the disease is so variable from person to person, that was the best, most honest, and accurate answer he could give me. I'd scared myself silly with statistics and hey, you know what? I'm on the winning side of them. Hopefully you will be too.

I'm sure others are going to chime in with suggestions for you and having to wait a bit for your appointment will give you time to do your homework. (And practice the punch line for a few jokes. :lol: )

Big warm hugs to you,
Jeannie McClelland
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#7 razz

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Posted 26 March 2009 - 02:48 PM

Hi Kaurie,

The best advice I can give you is stay positive, hopeful and always have faith that you will get better, feel better and most importantly draw on your sense of humor! If you're running low on humor, we have plenty to go around because that's what keeps us going as you can see. :lol:

I understand how difficult it is waiting for a doctor's appointment or test results. Using this time to prepare yourself for your doctor's visit is a great approach. Be sure to find out as much as you can about the doctor's background, how long has he been practicing, his experience with scleroderma, how many of his patients have scleroderma or autoimmune-related diseases, what types of treatments does he recommend, can he be reached by telephone in an emergency, is he open minded to trying other treatments, does he answer your questions to your satisfaction, etc. If you decide this is someone who you feel will provide the best possible treatment than you are pointed in the right direction. Once he determines your diagnosis and depending on what your symptoms are, then he can order the necessary tests. These are just ideas to get you started and don't be afraid to ask any question no matter how insignificant it may sound. Bring a pad of paper in case you want to take notes. Take someone with you to your appointment. It always helps to have another person there for support. Lastly, remember your doctor is your partner and together you both will decide what is best for you.

I am glad you found this forum and hope you find answers to all or most of your questions.

Welcoming hugs,
Razz
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#8 Penny

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Posted 26 March 2009 - 04:40 PM

Kaurie,

Welcome to the forum.

I am sorry that you have gone through all of this and that you might have actually been dealing with this since you were 7 years old without knowing.

Like Jeannie, I would recommend seeing a gastroenterology specialist who can evaluate your stomach issues and hopefully treat it so that you can be more comfortable.

You said that your family is in denial, but I wanted you to know that you have a new extended family here full of sisters and brothers, Aunts and Uncles who are always ready with a hug and a shoulder.

This is probably the most supportive and uplifting group of people I have ever met and I can tell you from personal experience that even when you feel like you are going to fall, they won't let you. Not because they force you to keep going but because it is impossible to fall when you are being held up by loving arms.

This is also a group that is afflicted with the best condition known to man... we seem to be contagious and you might find yourself catching it from us. It is laughter and it strikes when you least expect it. One minute you are feeling down and you log on to see if anything new is posted and the next moment you find a post that gives you a laugh without warning.

I hope that you get some of the answers you need soon, you will probably never get the answer to if it has been Scleroderma since you were 7 because they may never be able to say for sure. I am thinking that part of your family's denial might be a little guilt, misplaced guilt but guilt all the same. As a mother of a daughter with Aspergers I felt horrible when she was finally diagnosed because I wondered if I could have done something different and it took years for other family members to accept her diagnosis. They felt guilty that they would get 'short' with her when she obsessed about something or screamed when there was a thunderstorm like it was killing her, not knowing that to her that thunder was actually painful. They finally did come around, it helped when she told them, "If the doctors didn't know, how could you?"

I am sorry about the circumstances that led you to find the forum, but at the same time glad you are here.

Warm hugs,
Penny

#9 Amanda Thorpe

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Posted 26 March 2009 - 05:13 PM

Hello Kaurie

Welcome to the safest place to learn about scleroderma. If the internet stuff was as accurate as it is alarmist we'd all be dead and buried by now, clearly we're still alive and kicking! :lol:

I am all for the humour; it's a great way to approach sclero particularly because it's such a fickle thing giving everyone an almost tailor made disease. Although some things are the same, we're all so different in the way we present. There are a myriad of symptoms; some you'll get, some you won't and there's really no way of knowing. I understand trying to figure out when the clock started ticking but you can't always and it doesn't necessarily mean anything anyway.

You've had excellent advice regarding your appointment. Remember that we don't have to be grateful to finally see a doctor, we're entitled and that entitlement brings with it certain responsibilities on the doctor's side. If they don't live up to your expectations tell them and if necessary go elsewhere.

Many years ago when my mother was in hospital my sister and I had a confrontation with Dr. I Have An Attitude. Now bear in mind my mother had already had 2 heart attacks and had just had stents put into the arteries and the doctor was going to diagnose her with... reflux. Now whilst my sister was putting him straight including telling him not to give her attitude and to get on the phone to the real doctor I was pulling faces and making rude hand gestures behind his back.* How mature of me but see, humour always works and needless to say mother got the right treatment.

Please let us know how you get on and any questions meantime post them here rather then surf the net.

Take care.

Amanda

*This is not a recommended mode of behaviour for the emotionally mature B)
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#10 kaurie

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Posted 27 March 2009 - 03:54 AM

Amanda and penny,

Thank you so much for your advice and you welcome. You all have been great so far. And the humor is contagious. lol... each one of you in one way or another in your notes have said something to either make me laugh or smile. It feels good knowing that I am not going through this alone. Thank You.

-Kaurie

#11 debonair susie

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Posted 27 March 2009 - 10:25 AM

Hi kaurie,

One of two things, first of all... I am so glad you have joined this awesome community. There are so many wonderful folks, in this family of ours...as you can see by those who have already posted!

Secondly ~I LOVE your name~

Now, to address the way you have been feeling. Reading the various things you have CAN be overwhelming. We can all attest that. Just don't let it get the best of you.

Your family doesn't want for you to be ill, that's the love of family. We can also understand their feelings, as that would also be our preferences.

Until you see a rheumatologist or a doctor who is knowledgeable and runs the proper tests/labs, please take the advice of the many others who asked that you remain calm, relax and don't jump to conclusions.

Today, we are so fortunate in that the treatments available to us now, are far superior than they used to be. Doctors are so much more aware and informed.

So many of us are our own advocates, when it comes to our healthcare. The more proactive we are, as partners with our doctors, the more comfortable we are likely to feel.

I hope that you post often and keep us posted, kaurie!
Special Hugs,

Susie Kraft
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#12 purplelibrarian

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Posted 28 March 2009 - 05:30 AM

Jeannie,

Have you met my doctor? She always says to call if you have new symptoms. I didn't know that was not a good sign. I never know what new symptoms I should call about. Is it scleroderma or something else. I usually just wait for the follow-up appointment which is usually scheduled for every 4 months.

#13 Jeannie McClelland

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Posted 28 March 2009 - 07:51 AM

Hi Purplelibrarian,

WHEN IN DOUBT, ALWAYS LET YOUR DOCTOR MAKE THE DECISION.

It's hard to know what might be a new scleroderma symptom and what almost certainly isn't. One of the new words I've learned since my diagnosis is 'protean', which means "displaying great diversity or variety." Boy, that sure describes scleroderma~ I figure since I'm not a doctor, I'll let him make the call.

When do I contact him as soon as possible? I never delay if it's anything that might be heart or lung related, kidney related, or is causing me serious discomfort. Am I going to disturb his Saturday because I've discovered new telangiectasias? No, but when I see him in three months, I'll mention it. However, if I'm seeing lots of new ones every single day and this goes on for a week, I'd call during his normal practice hours and ask that someone relay the message.

I'll also call if several or all of my usual symptoms get noticeably worse and stay that way for more than, say 3 or 4 days, especially if there is nothing else that could account for it. If the Handsome Hubby brings The Dreaded Lurgy home from work and infects all he meets, well, then probably my aches and pains, fever, coughing, etc. are due to something infectious. BUT, if that compromises my breathing even in the slightest, I call the doctor immediately.

Does that help? I don't take my own advice often enough. Well, after all, my kids don't listen to me, so why should I? ;) But seriously, what I said at the beginning is really important. When in doubt, call your doctor and let him make the decision.

Big hugs,
Jeannie McClelland
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