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kaurie

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About kaurie

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    Missouri
  1. Hi. I am kind of new to the site but am currently going through the pain that you are going through. My ANA was positive for scleroderma but am waiting to see the rheumatologist to start the test and everything else for that. My regular doctor also thinks that I may have Fibromyalgia. Besides the pain I also have a lot of muscle weakness. it's worse in the mornings though. I don't know what kind of advice that I can give you because I am fairly new to this myself. Although I do want to let you know that everyone here as well as this site has GREAT information. Everyone's situation is a bit different and their stories and advice will help you with questions that you can ask your doctor about. They have helped me a lot. I have a list of them for mine when I go. ... I wish you best of luck.
  2. I hope everything goes well. It's good that you found it. I am not going through any thyroid problems as of yet but do want to tell you that I am familar with them. About 8 years ago, my mother had a tumor that grew a foot long into her chest and unfortunately she had to have open chest surgery. They finally got rid of it and then about 8 months ago she finally told us that she had been hurting again for a while. My mom is stubborn and isn't one to complain or go to the doctor. She didn't want to come to terms that it possibly is back. Well, she finally went to the doctor and found out that she had a small non-cancerous tumor. Her doctor put her on some medications that actually shrunk it within 3 months. As of today, she is cancer free. I now get checked once a year with my thyroid. What doctors come up with as far as meds these days are amazing. One day they will find a cure for the scleroderma. One day, we won't have to worry about anything. I have faith and hope in that. I wish you the best of luck and I hope that you will have a Speedy Recovery. Lots of hugs to you and your daughter!
  3. I went to the doctor not too long ago because I had swelling and severe pain in the middle and right side of my stomach under my ribs. They sent me to the hospital where they did a CT scan on me and took blood work on my liver, etc. They said everything came back fine. So the doctor said they were going to send me to outpatient to have an ultrasound, gave me pain pills and sent me home. Well, my ultrasound showed that I had thickening of the gallbladder wall and that was all. So my regular doctor sent me to have this radioactive test done and it showed that my gallbladder was working correctly. On May 12th I am going to a gastroenterologist because my doctor doesn't know what is going on. So my question is, has anyone had this happen, just the thickening of the gallbladder wall and what did the doctor say to you? I have my first rheumatology appointment on May 26th for the scleroderma which I have to drive 3 hours away for. I didn't know if that possibly could have something to do with it. My doctor also put me on Lactulose because my constipation has gotten so bad that I would only go every 5 - 6 days. Although I am going normally now, I still hurt and am still swollen and my lower back is starting to swell as well. I now have a faint rash appearing on my stomach and sides. So I am not sure what to make of it. If you have any ideas or anything on how to help with the swelling and stuff in the meantime, I would greatly appreciate it.
  4. 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
  5. 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. 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
  7. 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
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