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Posts posted by Teatime

  1. Mae,

    I'm in Abilene, too!! Which rheumatologist are you seeing in San Angelo? He said I might want to go to the older, more experienced rheumatologist. Can't remember his name. But my internist said I need an expert and someone on the cutting edge of new discoveries and therapies. She wants me to see someone at UT Soutwestern.


    To all,

    Thanks for all of the info, support and hugs! I'm still reading. I've been in a lot of pain since the weekend -- it hurt like mad to take a deep breath -- so I apologise for not posting until now. I'm resorting to pain medication but it is getting the horrible pain under control.

  2. Ooops, forgot a few things. First off, the last rheumatologist didn't look at my medical records and decided to take me off my immuno-suppressants to "see what happens." Well, what's happening is that the inflammation in my hands is horrible, the GI symptoms worsened (especially the difficulties swallowing), my joints hurt like mad and I've developed a dry cough and shortness of breath. My internist put me on prednisone but I'm off it for a bit, at present.


    Jo, I'm concerned about the lung manifestations. Would you mind sharing what the initial symptoms are and what appropriate tests should be done?

  3. Thank you, all, for the warm welcome and information! I live about 180 miles from Dallas and I'm pretty sure that there are some sclero specialists there. My internist really wants me to be seen at the University of Texas Southwestern Medical Center. They have a good rheumatology department. But there's no way I can afford to pay for consultations and tests there. :(


    We're supposed to be getting a new rheumatologist in town this summer so I'm hoping he's a good one. The last one was such a disaster that maybe the hospital was more careful and selective this time!


    Marsha, that word "telangiectasia" is written often in my medical records from my first rheumatologist. I don't know how to pronounce that or what it means exactly!


    Thank you for all of the links! There's so much good information here, I'd best get reading!


    All best,




  4. Hi all,

    I'm really struggling and could use some advice and direction. Mine is a long story so I apologise ahead of time!


    I was first suspected of having autoimmune disease by my primary doctor 8 years ago. He sent me to a rheumatologist who was very thorough. At first he thought I had RA but I also had symptoms of irritable bowel disease and MRIs of my spine, etc. showed sacro-iliitis and spondylitis, too. I was treated with methotrexate and Remicade which improved some things but stirred up organ involvement, particularly kidneys. The MTX made me very ill (vomiting) and had to be discontinued. I was then treated with Cellcept and plaquenil.


    Labwise, my ANA is sometimes positive. I've also had some of the Lupus tests come back positive repeatedly. And the last tests my good rheumatologist did included SCL-70 which came back positive. He was concerned about that so he repeated the test and it came back positive again, with almost exactly the same number. But before we could investigate that further, I moved out of the area.


    Since then, I have not had good rheumatological care. The rheumatologist in my new city just continued my meds and didn't try anything else or follow up on the sclero. possibility, even though my condition wasn't stable. I do have a fantastic internal medicine doctor who is extremely worried about me and has been trying to find a good rheumatologist for me. Unfortunately, she thinks I really need to be seen by top-notch rheumatologists in Dallas but my insurance won't permit me to go to doctors in Dallas.


    So, I'm being treated by a bunch of specialists focusing on their own area. I have severe GERD and am on several meds because swallowing is difficult and painful. I had an esophageal dilation done last fall but it didn't do much good. I take two drugs to reduce the spasms and they are helping some, thankfully. I also have vasculitis and Crohn's lesions in my small intestine so I was diagnosed with Crohn's Disease.


    I have a lot of inflammation in my hands and Raynaud's in my fingers and toes. I have weird, oval sections of inflammation in my forehead near each eyebrow and discoloration around each temple. I also have odd little "blood spots" on my torso and on my face near my mouth. My good rheumatologist was documenting all of this and keeping a close eye on my symptoms but now all I have is my good internist who is concerned but unable to diagnose and treat severe issues like this.


    I've had three surgeries on my shoulders in the past two years because my tendons have been tearing. Two literally tore off the bone and had to be reattached. In February, I had to have a cryoablation done at Baylor heart hospital because something was putting my heart into frequent and very dangerous heart rhythms. In two weeks, I'm seeing an orthopedic surgeon for damage to the connective tissue and such in my hip. A cyst and deformities have developed that are causing bad pain but the hip joint itself is fine. My internist wants him to fix what he can so I can get some relief from the pain.


    My body is attacking itself and I don't know where to turn. Much of this seems like symptoms of scleroderma, especially since the SCL-70 tests have been positive both times they've been run. The not-so-great rheumatologist who was here left town. People stopped going to him because he didn't do much of anything. My internist says I need a super-good, thorough rheumatologist and she's right. We just don't have one in the area.


    What do I do? Is there another specialty that can help or should I just keep seeing all of the different doctors unless/until we get another rheumatologist? Right now, I'm being treated by my internist, GI doctor, cardiologist, orthopedist, and a new neurologist is going to be added. It's confusing and exhausting. I think I'd be doing better if the doctors were focusing on the root cause rather than all of the individual stuff. My internist thinks so, too.


    Advice? Suggestions? Thanks for reading and I'm sorry about the length of this!