Lindalou

214d

Has anyone been told they are terminal due to mctd and sle lupus? This is regarding my dgtr 28 yrs old she was diagnosed 7 years ago.

Chest pain

Generalized pain

Diffuse connective tissue disease

Chronic Generalized pain

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  • KJWolf

    214d

    The more serious cases are when the internal organs are affected. Some people have needed organ transplants, such as my friend needed a kidney. My doctor has me tested periodically for heart, lung functions, and of course, lab work for the liver, kidneys etc. We both have been living with it for two decades. Knock on wood.

    • Lindalou

      214d

      my dgtr kidneys are shot she can’t, her spleen and liver are bad they believe she has cancer now from biopsies she just had and also in her reproductive system her veins have pretty much collapsed they had to remove her top teeth this was all due to the chemotherapy she had it just killed her healthy cells and now she’s left to deal with that shit they certainly won’t give her pain medication because they don’t want her to become an addict give me a break Now when she has to go in because she can’t breathe or she’s having pains in her heart she ends up staying a longer period of time I feel like they use her as a guinea pig

  • TrixNY

    214d

    I’m so sorry you’ve been told this by your doctor. So worrying and upsetting. The only person I’ve ever know with SLE who was terminal (and sadly passed in her 30s) had lupus as a young child. She needed a kidney transplant by 17yrs old. My doctor said, and the research I’ve done, seems to suggest someone with SLE can expect to live into their 60s or 70s if organ and joint damage is managed.

  • ShenNinja

    214d

    I was told when I was diagnosed I had 6 years to live. May 6th will be 6 years since I was diagnosed. Hoping to live a long time.

  • Lindalou

    213d

    Thanks guys I appreciate you sharing I’m just sick of the BS they keep handing her she sees her OBGYN this week to see if removal of her ovaries will help and also her cardiologist I just wish they would control her pain instead of worry about her becoming addicted to them Jesus I mean really!!!

  • KJWolf

    213d

    Are you open to alternatives, like cannabis for example? I would also try contacting another doctor for 2nd opinion. And writing to Johns Hopkins rheumatologist in Baltimore. They study sle. I'm so sorry this is happening!!!

    • Lindalou

      210d

      thank you, she has done all that already and yesterday she saw her rheumatologist and he told her that be cyst they removed from her shoulder was cancer and it’s infected because the disease destroyed the antibiotics in her system so they will needed to do something else as she has 3 more on the upper back part of her thigh ?? I have suggested red light therapy I’ve heard good things about it but she needs to ask the rheumatologist first and they want to do another transfusion she needs to decide that and a bone marrow transplant is out because she will not do that to her son and our family members have lupus too it’s just such a heart breaking shit show but, I appreciate your response 💕🦋

  • Rubyred1

    176d

    Oh these dr with the pain meds! It's ridiculous. I wish they would live in the pain we do ,then we could talk about it. I'm sorry your daughter is struggling right now. Have you gotten a second opinion? I seen many Dr's before I found out what was wrong and kept going til I found a pain dr that listened. It's frustrating. Medical cannabis has also helped me alot. She may want to try that. Best of luck!

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