mixed connective tissue disease

Posted by charbaby @charbaby, Aug 26, 2011

I have been diagnosed in the last 6 mo. first the labs came back lupus, speckled. No typical butterfly rash on face. The rash was on my chest where I was briefly exposed to sun. I am olive skinned never even had a bad sunburn! They did steroids and that didn’t help. Referred to a derm who did a biopsy of the area involved that came back dermatomyositis, scleraderma. Now the chest rash is gone and I have both arms covered in a raised rash, tissue is broken down on the right arm. Infection set in and I can’t describe the miserable itch. Anyone out there that has anything like this nightmare! I am on methotrexate.

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I am new to this site. I started having problems about 3+ years ago. It started with a bald spot on my head. The derm biopsied it and it came back discoid lupus. She sent me to a rheum who ran some tests. At that time they were on “paper” records and the rheum couldn’t find the test result in my file. He didn’t think the diagnosis was right. I went to my primary. He told me I didn’t have it either. All the while my derm telling me they were wrong. My only experience with doctors up to this point was my female preventative care, very rare visits to urgent care when really sick and ob/gyn when pregnant (all pretty standard). Now I had 3 doctors disagreeing and confusing me and I began to see what happens when things fall outside the “easy diagnosis”. Finally I got in touch with the CEO of my medical center (only because they have started a new thing in California where surveys are done on their specialist doctors and reported to a nuetral website where people can see the quality of the doctor). I got a letter from the clinic saying I was going to get one of these surveys. The letter was form signed by the CEO and at the bottom said “we care about you”. I wrote in big black marker that I didn’t think (I’ll leave the name of the clinic out) cared about me!!! and mailed it back to her. She called me and got involved and had another reading of the test done at UCLA. The pathologist called my primary who told me it was discoid lupus. My primary told me it was (feeling no embarassment, remorse, sense of apology etc.) My rheum still didn’t believe it and called my primary to confirm and my primary told him he remembered talking to the pathologist but couldn’t remember what was said. OMG I am really starting to see how flaky the medical profession can be by this point. I couldn’t believe it. Since then I’ve had many things turn up in tests but currently am diagnosed with mixed connective tissue disease. I have a dilated aortic root (heart), thyroid disorder and nodules, pericarditis (heart), ground glass attenuation (lungs), anemia all resulting from the AI. Most of these things I wouldn’t know I had unless I went and got all my medical records. When my rheum first ordered tests and said he’d see me back in 3 months, I tested positive for RA. No one ever called me. The rheum couldn’t find my test results. HIs nurse said things always get burried in his office (I can’t believe what I’m hearing). He seemed surprised to find out that something was actually wrong. When this started, I decided I wanted to read for myself all of my medical findings. So I go to the clinic and pay for my records every few months. My rheum wasn’t going to tell me about the anemia, but I already knew about it since I get my records. So I told him that I had it at my appt and he said he knew. Then he ordred tests. He was just going to blow it off. Several tests came back with problems and he put in his notes for me to go on iron and for someone to call me and tell me. No one called me. I had to call them and ask them what to do. His snotty nurse seemed peeved that I knew more about my case than she did. When I asked her what to do, she barked get an iron pill. I asked her what mg and she barked there are no mg amounts in iron its all the same. I get to the store and find out there are different mg amounts. I complaiined to her supervisor. I’ve complained on several occasions, but save my complaining for more serious things. This is just the tip of the iceberg on the pathetic care I would receive if I weren’t proactive and staying on top of my own case. I research everything I read in the test results and doctors notes. I’ve noticed that my rheum is upping his standard of care since he knows I get all my records and am one step ahead of him. I still feel horrible a lot of the time and the lonliness is often overwhelming because no one can understand this unless they are going through it. Part of what is so hard is knowing I’ve only been dealing with this for 3+ years and I have my whole life that I’ll have to be dealing with this. I’m 51. Its very overwhelming at times. I guess my whole point in this post is after reading that you all have experienced these low standards doctors to suggest that you get your records if you aren’t already doing so. This way you’ll be a step ahead at all times. Every time a new finding pops up I research it on reputable sites. My specialists know I will go in and expect them to be honest with me and that even though I’m not a doctor, I’m more educated on my findings than they are probably used to dealing with. I have a saying that I have to “scratch and claw” to get the bare minimal acceptable standard of care. I don’t know if this will help any of you, but I hope so. If you have any advice for me, I’d love to hear it. Take care.

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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I also have problems with indigestion, reflux, aches, pain, brain fog and fatigue. Thanks for your reply.

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@whathappenedtome

I am new to this site. I started having problems about 3+ years ago. It started with a bald spot on my head. The derm biopsied it and it came back discoid lupus. She sent me to a rheum who ran some tests. At that time they were on “paper” records and the rheum couldn’t find the test result in my file. He didn’t think the diagnosis was right. I went to my primary. He told me I didn’t have it either. All the while my derm telling me they were wrong. My only experience with doctors up to this point was my female preventative care, very rare visits to urgent care when really sick and ob/gyn when pregnant (all pretty standard). Now I had 3 doctors disagreeing and confusing me and I began to see what happens when things fall outside the “easy diagnosis”. Finally I got in touch with the CEO of my medical center (only because they have started a new thing in California where surveys are done on their specialist doctors and reported to a nuetral website where people can see the quality of the doctor). I got a letter from the clinic saying I was going to get one of these surveys. The letter was form signed by the CEO and at the bottom said “we care about you”. I wrote in big black marker that I didn’t think (I’ll leave the name of the clinic out) cared about me!!! and mailed it back to her. She called me and got involved and had another reading of the test done at UCLA. The pathologist called my primary who told me it was discoid lupus. My primary told me it was (feeling no embarassment, remorse, sense of apology etc.) My rheum still didn’t believe it and called my primary to confirm and my primary told him he remembered talking to the pathologist but couldn’t remember what was said. OMG I am really starting to see how flaky the medical profession can be by this point. I couldn’t believe it. Since then I’ve had many things turn up in tests but currently am diagnosed with mixed connective tissue disease. I have a dilated aortic root (heart), thyroid disorder and nodules, pericarditis (heart), ground glass attenuation (lungs), anemia all resulting from the AI. Most of these things I wouldn’t know I had unless I went and got all my medical records. When my rheum first ordered tests and said he’d see me back in 3 months, I tested positive for RA. No one ever called me. The rheum couldn’t find my test results. HIs nurse said things always get burried in his office (I can’t believe what I’m hearing). He seemed surprised to find out that something was actually wrong. When this started, I decided I wanted to read for myself all of my medical findings. So I go to the clinic and pay for my records every few months. My rheum wasn’t going to tell me about the anemia, but I already knew about it since I get my records. So I told him that I had it at my appt and he said he knew. Then he ordred tests. He was just going to blow it off. Several tests came back with problems and he put in his notes for me to go on iron and for someone to call me and tell me. No one called me. I had to call them and ask them what to do. His snotty nurse seemed peeved that I knew more about my case than she did. When I asked her what to do, she barked get an iron pill. I asked her what mg and she barked there are no mg amounts in iron its all the same. I get to the store and find out there are different mg amounts. I complaiined to her supervisor. I’ve complained on several occasions, but save my complaining for more serious things. This is just the tip of the iceberg on the pathetic care I would receive if I weren’t proactive and staying on top of my own case. I research everything I read in the test results and doctors notes. I’ve noticed that my rheum is upping his standard of care since he knows I get all my records and am one step ahead of him. I still feel horrible a lot of the time and the lonliness is often overwhelming because no one can understand this unless they are going through it. Part of what is so hard is knowing I’ve only been dealing with this for 3+ years and I have my whole life that I’ll have to be dealing with this. I’m 51. Its very overwhelming at times. I guess my whole point in this post is after reading that you all have experienced these low standards doctors to suggest that you get your records if you aren’t already doing so. This way you’ll be a step ahead at all times. Every time a new finding pops up I research it on reputable sites. My specialists know I will go in and expect them to be honest with me and that even though I’m not a doctor, I’m more educated on my findings than they are probably used to dealing with. I have a saying that I have to “scratch and claw” to get the bare minimal acceptable standard of care. I don’t know if this will help any of you, but I hope so. If you have any advice for me, I’d love to hear it. Take care.

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I always get a copy of anything or test done because they don’t even call you anymore to tell you some thing is wrong. I recently had three vials of blood drawn for a lot of tests–liver, kidneys, electrolyte panel, CBC,— 3 or 4 tubes of blood were drawn from me, and was never called about the results. 3 weeks later I went to get them and guess what–I was only given a CBC result and told that nothing else was drawn. Isn’t that interesting…I am planning to contact the insurance company and see what tests they billed for. Scratch and claw for the bare minimal of care is a great description!

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@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

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Any side effects of the methotrexate yet?

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Any reaction to the methotrexate yet?

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I’m new to this site. Wish I knew about it when first diagnosed 5 yrs ago. I was diagnosed with dermatomyocitis but it took 6 months to get correct diagnosis. After the first rheum doc said he didn’ t know what was wrong, gave up on him and sought another. Found out first rheum was
More interested in taking photos for publication. Should have known. 2nd doc diagnosed me immediately when he first saw me. He switched me from celcept to methotrexate started plaquinil and mega steroids. Steroids made skin worse with open sores but eventually resolved but not the rash. Eventually started C-quinicrine and switched from pill form to injectionable methotrexate. After several years of this combo rash finally resolved but left scarring most visible on my face. Now on cyclosporine with occasional steroids for flare ups. I also have reynauds syndrome, joint and muscle pains. There are days when getting out of bed is a chore but must keep moving or gets worse. Along with the autoimmune diseases comes some type of lung disease. I have interstitial lung disease/pulmonary fibrosis. Was hospitalized several times with lung infections. But living with shortness of breath everyday can be unbearable. Was enrolled in pulmonary rehab and it helped a lot. I know what you’re going thru. I totally understand. As far as the itching you might ask you’ re md for triamcinalone cream, s steroid cream that’s stronger than over- the-counter. Won’t work immediately, took me about a month for rash to feel better. I truely hopes this helps you.

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@katie

Charbaby,
First of all, thanks for being my friend and for praying for me. I will pray for you also. Prayer is what has gotten me through this experience thus far. To answer your questions: I am 51 years old. My diagnosis was based upon lab work for (ANA, Compliment tests). I have insurance through the hospital where I work (we are self-insured and I have a 2,000 deductible).I am 2 hours away from both the University of Louisville and Vanderbilt University. I had a biopsy of a hive and the surgeon did not order the right tests on my biopsy, so my initial biospy was inconclusive. I have no Rheumatologist or Dermatologist.The Theumatologist denied my case. I am still struggling to find someone who can help me or even cares to help me. My primary physician is young and new to practice. I have an appointment with him next week to dicsuss where to go from here. I am just struggling as to what direction to take. I am a Registered Nurse with a Doctor of Nursing Practice degree. I believe that my healthcare providers think that I am supposed to know what to do. I do not have a clue about this,as my degree focuses on advanced nursing care, research and education.

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Sorry your having to deal with all this
I seen several drs they all have a different diagnosis
Scleroderma and crest
One yes raynauds one no
They just keep adding to my list
I’m going to keep on trying

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