My name is Aeilani(eye-law-knee), but you all can call me Lani.
I am so glad I joined this group, thank you all for the support and love.
I am new to this group, and have joined because I was diagnosed with MCTD last week. I got a blood clot in my leg that led to a pulminary embolism in my lung. Best part is, I got it right after my 21st birthday. Lol, happy birthday to me. The drs couldnt figure out exactly was was wrong with me till last week. I am glad we finally figured out whats going on with me, but now I'm terrified. I'm fucking scared. I was reading online that most people are expected to live about 10 years after they've been diagnosed, which is what braught me to this group. A lot of you said that wasn't true, and used yourselves as an example. That made me feel a lot better.. but... It didn't take mt fear away. I was never afraid of death before, and I think it was because I somewhat thought I was invisable - atleast for now, while I'm young. I've always thought that I was going to die from some sort of traggic accedent or crazy fall while hiking, or random crash.. never from a disease. So now that I've been diagnosed my depression has worsened and I honestly feel doomed.... I know I shouldn't give into this feeling, and that doing so will only make it worse, but hoenstly... I dont know how else to feel. Did you all feel this way too? I mean fuck... my dr said I can't sunbathe anymore, or go on long hikes... When I heard that i broke down... I just... I dont know.. I feel hopeless now, and I don't want to feel this way.
Thank you for letting me rant.
I feel like this group will help me a lot.
I turned 55 years-old today. I have been diagnosed with MCTD in July 2018. I have been prescribed hydroxychloroquine, methotrexate, prednisone, folic acid, duloxetine, etc. I have stopped taking all medication due to side effects of medication, mouth and tongue ulcers, tightening of gums in mouth, etc.I am a single mother of 4 adult children. I reside alone and work a full time job. I...
does the amount of RNP distinguish the severity of disease. I have been tested for years because I have had CRP and ESR rates get dkjcatuate but are never really high at all. ANA is always negative.my RNP came back at 27 with normal being 0-19. My dr says that at my age and with no symptoms to speak of.. I shouldn’t worry.No other tests were run and now I am noticing all these things that I...