Want a new test done!---Ranting because I need to

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I want to get a new test done for Lupus. I'm tired of beating around the bush, and my mom is saying that it might be fibromyalgia instead of lupus. I just want a diagnosis! At least if it's Lupus, I know how to deal with it! Why can't the doctor put something other than 'connective-tissue problems' on the stupid referal?! Please excuse my ranting, but I feel like I'm going nuts! 15 years of 'it might be Lupus' already has my hopes up of a diagnosis, but no! No more blood tests since I don't have healthcare anymore, and I have to pay for it all out of pocket! For obvious reasons, I can't go and get my limbs chopped off when they hurt the most! I actually want it to be Lupus! At least this way I have someone to talk to compared to know-it-all-know-nothing doctors! A few months ago, my mom says, "you know it's Lupus" and about half and hour ago she says, "It might not be Lupus. If might be fibromyalgia". GRRRR!!! Why can't anyone make up their minds!!! I'm so frustrated that It's making me depressed! I hurt nearly everyday, and not effected by the weather. Sometimes my leg hurts to the point of being unable to walk on it, I have to wrap my arm and it hurts to write. All of this, and I can't get an answer!

I was diagnosed with SLE even though I don't have positive ANA tests and my mom has changed her story again to 'It might just be fibromyalgia neuratica' ( I hope I spelled that right! lol.), and I need to find a doctor WILLING to redo all of the annoying tests. I don't care if I ended up with 100 blood samples taken. I am now stuck in the middle of my own little twilight zone. I'm ranting again. sorry. lol.

Updated 01-26-2010 at 11:01 PM by wolfwhisper

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  1. SugarSnit's Avatar
    hugs. I wish I could tell you I have no idea what you're talking about - but I've been there. It's better to find a WOMAN rheumy. It just is. And to go to a good one even if you have to travel. It's also good if you're a millionaire, aren't sick, and live on planet perfect.

    I'm sorry you're dealing with these frustrations. I really am. I used to say I didn't care about a diagnosis. But I realize that I am taken MUCH MORE SERIOUSLY and treated much more quickly now that I have an "official" diagnosis.
  2. Millie's Avatar
    Hugs and strength to you. I've been fighting with doctors for almost a decade now, and it just seems that with this disease, not only do you have to fight the illness you have to fight the people who are supposed to be helping you as well. Double battle.

    As SugarSnit said: "It's also good if you're a millionaire, aren't sick, and live on planet perfect. " So true.
  3. SugarSnit's Avatar
    gah - I take this back now. I JUST saw a woman doctor (not a rheumy- I still love mine) - just a primary care doc. And she was so wicked and disrespectful. I took my "list in" of 3 things that are going on and she was sooooo disrespectful. She didn't want to listen and said, "I only have time to listen to one thing." And I said, "this is my physical - don't you think you should LISTEN to all three things and then tell me if they are important or not?" She then said, "I think you have severe mental disorders. All within 4 minutes of meeting me for the very first time. So a woman doc is NO BETTER THAN A MAN ANYMORE. They can all be equally arrogant and foolish and ridiculous.

    I took my self out of there and complained to her chief of staff. He took me very seriously and made sure I got a letter of apology from her. Because THAT was ridiculous since I had signed up for a PHYSICAL -- so taking in a list of concerns was RIGHT and normal. and being told that she thought I had a host of mental illnesses within 4 minutes (I dont - but even if I did - she needs to refer me to the proper help- not use it as a weapon - treat mental stuff like a disorder just like lupus or diabetes or heart problems duh).... grrr.

    I really hate medical people even though I NEEED THEM to survive. Is very love/hate right now. My condolences still remain.