Total frustration seems to be a part of our life. I am having the same issues and have heard so many others complain of the same thing. It is like, you are sick with "something" for so long. Finally, you are told, no you are not nuts, you really are sick! You have a name for your pain and are vindicated! Then, it is taken away and you again, are sick and have no name so you feel like no one believes you! But you still feel the same. It this what insanity feel like?
I luckily have a Dr who will continue to treat me in spite of the changes in my blood work but not all of us are so lucky!
Mary Ann

Tell them you appreciate their opinion, but respectfully disagree.

Tell them you are in a support group and that we all have high anti RNP but at least half of us don't have positive ANA, and that we have observed that there seems to be a trend to change the DX to fibromyalgia or say the patient does not have MCTD, even though this does not seem to be based on anything in particular.

Ask if the doctor feels this trend has to do with managed care and insurance, but be very, very nice. The doctor may agree with you, many doctors are very frustrated too.

It is worth noting that many of us here have spoken with more MCTD patients than a rheumatologist will ever see in their entire career.

Ask the doctor how many MCTD patients they have treated. Be curious, tell them the truth, that we are all just very curious.

What they tell me is that my joints are not red and swollen so the pain cannot be that bad, which is insane. My joints crack when I downshift or put dishes back on the shelf on a bad day.

Hello,
I feel very sorry what you go through and I don't blame you that you don't want to go back to any doctor again... But you should keep on going again and again to doctors, until you are being diagnsed because that is very vital for your well-being. One of the frustrations with SLE/Lupus/MCTD is, that it only ever shows up in rather severe flare-ups.
If you feel not being understood by doctors at this moment: that is understandable, because many doctors feel rather helpless or even at a loss when they are being faced with a patient who possibly suffers from SLE/Lupus/MCTD but is not yet being diagnosed .. All doctors can do before diagnosis, is taking regular blood-tests to figure out whether it shows up yet or not and all that that may take a bit of time ...
I have noticed with that many of my flare-ups don't even show in the blood-tests... and "my" SLEMCTD only really ever showed up in blood-tests whilst I was being hospitalized and immobile during a huge flare-up...
Before being diagnosed I also had the feeling at one point that I was going around in circles without getting anywhere and that was very difficult to take ....
... Unfortunately the symptoms vary with each SLE/MCTD-patient and the best we can do is trying to learn as much as we can about our own body-flare-up-pattern ...
I also remember that before being diagnosed I was very distressed because I feared that whatever I was suffering from was very serious and doctors were not diagnosing whatever it was and my fear was that "time was running out" and it was such a great relieve when I was being diagnosed and that gave me a chance that I could learn what it was all about... I do hope you get your diagnosis very soon and I send you my best wishes
from Kristina.

Thanks for your support! I spoke to my husband and Mom about it and they agree, that I do have it and that the Doctor is just at a loss for what to do. She also did get upset with me because I usually go to my primary doctor and not her. She even made the comment "You don't need to come back. Go to your primary if you want." That kind of tells me she is upset. I always go to my primary because they were the ones to figure it all out for me and they know all of my history and get me in right away to get me treated. Where as my Rheum is a month wait. Well, if I'm flaring, I can't wait a month.

I was very upset about this the day I wrote this post (the day she told me), but now I am ok with it. I know my body and what is wrong. Like my husband pointed out... I can't eat gluten or dairy without getting sick. I know if I work too hard or don't get enough sleep, my joints hurt and my muscles all feel like I just ran a marathon. She can't tell me how I feel!!

I will continue to do what I know is good for my body and push on. When I have a flare, I will just go to my primary and keep going.