Does anyone have advice in getting definitive answers?

I’ve been seeing a rheumatologist ( well his PA i haven’t seen the physician yet) for three years still no answers. The PA has ordered a ton of labs most are negative except for my Ana and RF. I have a three page list of symptoms that i am experiencing ( im so dingy and forgetful lately so i make list) that he doesn’t acknowledge. He just says you’re in the middle, you have some symptoms( not that he would know all of them because he wont address my list) but with negative labs he wont say for sure that it is RA. He does say i definitely have autoimmune things going on but again not enough positive labs to be a definitive diagnosis. I am so frustrated and so want relief from the pain in my hips, neck, back, toes and fingers. So any advise to help me get the Rheumatologist PA to listen to me would be helpful.


Community Answers
  • Mary Sophia Hawks moderator
    4 days ago

    If you’ve been seeing only the PA for 3 years and never the rheumatologist, there’s a problem. A second opinion or changing doctors may be warranted. I understand your frustration. You need to be your own advocate. Richard gave you some great links, as did 2mra. My lab tests never showed anything until I took the Vectra DA. The current thinking is to start treating as soon as possible to prevent/slow the damage. I wish you all the best. Please know we are always here for you. Mary Sophia

  • joess
    3 weeks ago

    Hello,

    I have a similar situation as you. I have been to multiple hospitals and am going to Mayo Clinic in November. I only have symptoms in my both of my hands. All my lab tests are normal including MRI’s, X-Rays, and CT’s.

    One thing I have done for the past 2 weeks, that has been a complete game changer for me, especially when sleeping, is intermittent fasting. I have started a 14 hour fast 5 days a week and allow 2 cheat days. During that time, have done 3-24 hour fasts, which I thought was the biggest benefit.

    The 24 hour day, I have a huge breakfast, take my plaquenil and 5mg of Prednisone, then only drink water or black coffee the rest of the day. To curb my hunger, I would drink about a gallon and a half of water. I also like to train fasted because that too will increase the autophagy that will ultimately kill your autoimmune cells.

    You may want to check out this Joe Rogan Podcast with Dr. Rhonda Patrick:
    https://www.youtube.com/watch?v=9M8X_bs_fzI

    Prior to this time restricted eating, I would have severe pain throughout the entire day, and my prednisone/plaquenil was not keeping up with the inflammation that was occurring.

    I hope this helps.

    Thanks,
    Joe

  • Richard Faust moderator
    3 weeks ago

    Hi KellyT. As mentioned by 2mra, if you feel you are not being heard, you are always entitled to a second opinion. In this article one of our contributors looks at signs that it may be time dump a doctor: https://rheumatoidarthritis.net/living/dumping-doctor/.

    Finding a new rheumatologist isn’t always easy. This tool from the Arthritis Foundation may be helpful in finding doctors in your area: http://resourcefinder.arthritis.org/.

    The information you have already prepared for a doctor should be helpful moving forward. In addition, thought you might find this article on questions for the doctor useful: https://rheumatoidarthritis.net/living/questions-for-the-doctor/. Hoping you find some answers soon. Know that this community is here for you with information and support. Best, Richard (RheumatoidArthritis.net Team)

  • KellyT author
    4 weeks ago

    Thank you i will take your advice.
    Im in the middle of switching primary care physicians right now (not by choice but due to insurance i have to) as soon as i see the new one i will get referral to a new Rheumatologist.

  • 2mra
    4 weeks ago

    Hello There KellyT. Welcome to the forum.

    You’re Rheumy hasn’t seen you yet?? That’s
    terrible. Your PA hasn’t been very compassionate or informative either by the sounds of it.. Have neither of them heard of the Vectra DA test?? I think this would help diagnose you. If they aren’t willing to look into it, then there is something wrong with them. There are many Good Rheumatologists out there, if you look. If you find a new one, first ask the secretary if the Rheumy uses the Vectra DA test.
    She should know, or could ask.

    Along with other tests and physical exam, my RF was 175, so I was diagnosed with severe
    RA. Unfortunately, many of the drugs(including Biologics), didn’t work on me. There are many of us.

    RA is not a kind disease. You need to get on the appropriate medical cocktail that suits you, NOW, before it causes deformities and other problems.

    Here are some messages about Vectra DA:

    https://rheumatoidarthritis.net/q-and-a/vectra-da/comment-page-1/#comments

    You deserve much better care. The Best to you!

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