RenaissanceGirl

65d

I popped abnormal on a blood test this summer. It took two months for the doctor to say “I think you have this (which I found after five minutes of googling), but I’m not willing to diagnose it, go see a rheumatologist.” Two months to see him, to hear, “I want to make sure. So I’m going to run 9 vials of bloodwork to make sure of what we think we already know.” A week later I get a call “you have what everybody thought you did. But it’s a big concept, so we’re mailing you information on it. And he said ants to see you at the first available appointment.” I don’t ask questions, deliberately don’t look things up, and when the information gets here, it’s a single page print out of the generic information I found on the board of rheumatology’s website 5 1/2 months ago. The visit was three weeks out and now my whole brain is on the “HOLY FREAKING CRAP!” train. I see him next Thursday and I want to be smart about this. Scleroderma is a broad frickin’ diagnosis. Prognosis ranges from scary numbers about survival rates to them telling the patient to wear socks all the time. I want to ask the right questions, understand, but my brain is so freaked out I don’t know where to even begin. This is on top of chronic pain issues and a neurological disorder. I feel so alone and all I want to do is scream.

Anxiety (Including GAD)

Scleroderma (Crest Syndrome)

Depression

View all
  • Katzbac

    65d

    This sounds a lot like my journey with UCTD. They take a TON of blood and almost a year later they tell you what your body has been telling you most of your life. Just remember that they don't have all the answers, and since these immune diseases are quite literally 'catered' to your own body, drs won't have all the answers right away because its different for every patient. Its frustrating, but now the goal is figuring out what can help you specifically. If you need an ear then feel free to msg me. I got a proper (not exact, but something of an answer) a couple months ago so I know how you feel.

  • SalineTurnip

    65d

    I recommend writing down a list of quesgions and concerns to speak to your doctor about, so you can advocate for yourself.

  • dolphinblues

    64d

    I have been there twice. Once with me (and still don't have an exact answer) and once with my husband. With my husband, I knew within 20 minutes of looking things up and cross referencing with the research I've done for me. It took 9 months and 3 different Drs to say what I already knew. About 3 months before that, I had already started him on everything that they recommended. They were blown away. He told them, "yeah, my wife is my Dr House!" LOL Yes, it is scary as hell. I am truly sorry you are going through this. My suggestions are to write questions, concerns and thoughts down. Keep a notebook specifically for this. Write down their answers or ask if you can record your visit so you don't forget what they said/recommend. You have done your research. You know the possibilities. Keep in mind that autoimmune diseases never present the same, they are as unique as the person is. That is why it takes so long to get an actual diagnosis. Take deep breaths, you got this! 🫂 🙏 💌

  • lostinbmore

    64d

    Just something to think about on the side which I have learned from my own life full of doctors telling me they don't know what's wrong with me. If this doctor is not giving you what you need, there are a lot of other doctors out there. It took me several tries to find a neurologist who would speak a plainly and listen to me rather than try to apply me to a set of symptoms in a game of matchup. The point of this being, there is a doctor out there who will better for you if this one is not feeling right.

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