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charbaby (@charbaby)

mixed connective tissue disease

Bones, Joints & Muscles | Last Active: Dec 31, 2021 | Replies (31)

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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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Replies to "I am new to this site. I started having problems about 3+ years ago. It started..."

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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