Living and Losing With Lupus

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Finally, a correct diagnosis!

pinkgrandmaof8
pinkgrandmaof8 Posts: 70 Member
in Social Groups
My Rheumatologist was finally able to give me an official diagnosis today. She said my test results reveal that I have Mixed Connective Tissue Disease. For me, that means I have lupus, scleraderma, schogrens (sp?), and reynauds. It's a lot to take in. Does anyone else have a diagnosis similar to this?
Tess

Replies

  • icklistpiklist
    icklistpiklist Posts: 64 Member
    I've had lupus from the age of 16 (now 44). Since then I've had reynauds and Sjögren's syndrome but fortunately not scleroderma. When I was diagnosed aged 20, I was told that my lupus would go after my menopause but now that more research is being done and there is more awareness I realise that this might not be the case :cry:
    Have been taking steroids and immunosuppressants for years along with other drugs as and when needed depending on what part of my body is being attacked.
    Wishing you all the best. Tough diagnosis but now you can learn how to control it.
  • pinkgrandmaof8
    pinkgrandmaof8 Posts: 70 Member
    Unfortunately, I have already been through menopause, so at least it is not true for me. :sad:
  • EPhinn
    EPhinn Posts: 119 Member
    I have Systemic Lupus, Lupus Nephritis, Sjogrens, and Raynaud's.
  • pinkgrandmaof8
    pinkgrandmaof8 Posts: 70 Member
    Nothing is simple in this autoimmune world! It sounds like having more than one disease is very common. Oh,, I forgot I also have thyroid disease.
    I have totally changed to a much more fresh foods and organic when I can find it diet. I don't eat beef or pork and have totally given up soda. I feel it's really helping me on many different levels. I have lost 42 lbs., I have more energy, my inflammation levels are now in the normal range and I feel better about myself.
    However, for so.e strange reason I gained 5 lbs. in last month and t h e only thing that has changed is they doubled the amount of plaquenil. Has anyone else experienced this? It's very discouraging to me.

    Tess
  • MultiGoddess
    MultiGoddess Posts: 39 Member
    Honestly, I don't think that autoimmune diseases ever ride solo. I have SLE, diabetes, hypothyroidism, RA, OA, fibro.. All autoimmune. I also have some other things going on. Hopefully when I go to USF in November to my Mom's rhuematologist I can get more answers. ,
  • shuki_cotren
    shuki_cotren Posts: 328 Member
    I don't know what I have. I've had 2 different rheumatologists diagnose my blood work as having my having SLE (lupus). My results probably show indicators of other stuff going on, but SLE is my major issue.
  • CharisSunny
    CharisSunny Posts: 276 Member
    My cocktail is an autoimmune grabbag.
    Lupus, raynauds, fibro, a lil hypothyroid, some vision issues, visiting IBS and the mental health challenges to tie it all together.

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