Blood work and misdiagnosed!?!

leslieb24, I am so sorry you are going through all of this. YOU ARE NOT CRAZY!! Pain is real and you have not found the right doctor that will listen.

I am going to my 3rd Rheumatologist, so I understand to a degree. It is very hard for them to give a diagnosis I have found. My C-Reactive Protein stays elevated. All of my other numbers finally came down within normal range. I went from "I think you have borderline Lupus, to, it's all Fibromyalgia & Osteoarthritis causing the pain."

Have you asked a doctor about Fibromyalgia? It is very painful. Also, is there an Eastern Medicine (Integrative Doctor) Doctor you can go too? They think outside of the box. Sadly, it is out of pocket most of the time. Have you gone to an Endocrinologist and had a complete thyroid panel? Thyroid issues can cause joint pain and fatigue.

I am praying for you right now. Keep me posted. I care. Blessings & Hugs....

Appreciate your response. I had a really great dr who once told his physician assistant “Treat the patient not your pocketbook “ wishing you better days ahead and improved health. And as always keep fighting for yourself when doctors don’t listen or just don’t care

How come integrated medicine and eastern health practices that give more direct diagnosis and better treatment options aren’t covered ? Answer is insurance doesn’t want anyone to get well.
Insurance would go out of business too

Search out the best treatment for yourself.

I pray you find a caring physician and able to have it covered.
I am saving up to go to a holistic physician who helped a dear friend. I have osteoarthritis and May be have lupus but they won’t say

Always be an advocate for yourself.
Take a trusted family member with you if u feel uncomfortable to speak up for yourself at least another support is with you and they will speak up for ya. Worth a shot. No matter what. You are important and u deserve good health care just like the physicians and rich people. Good luck better days ahead ✌🏼☀️

@seniorlady7 Treating the patient is a lost art in healthcare.

Wishing all the best to you, as well. ❤️

leslieb24 @leslieb24 I am so sorry for the pain you've endured all these years and for the frustration you feel because of the doctors' failure to provide you with help or viable answers. I agree with you that I wouldn't want pain that I've experienced and endured for years to simply be covered over with pills. I'd want an answer as to the root cause of the pain. You need answers! I hope that you can find a doctor who will listen to you and will go beyond the surface and delve into and investigate what is really going on with you, I don't know if it's that their caseloads are so overwhelming that they don't have time to look further into the matter, or they're just not willing to do so. Bottom line...you need and deserve answers. Please continue to advocate for yourself and, if necessary, seek out different doctors who will take you seriously and work with you to get a definitive diagnosis and develop an appropriate treatment plant for you. Maybe someone else on Connect who has had similar issues will be able go give you some additional insights/guidance. Don't give up. I pray that you get answers and relief soon. 🙏🏼

I am not sure how high your ANA titer is, but I have been told that once it is positive, it is always positive, so it is strange that yours was abnormal, then normal, then abnormal.

Even with an ANA of 1:5120 (normal < 40) diagnosis for me was/is uncertain. And a biopsy that was positive. Rheumatology diagnosis can sometimes take years, as you know, and for, say, lupus, there are specific symptoms such as Raynaud's, mouth sores, etc. and certain lab tests (antids-DNA).

The main thing that rheumatologists seem to monitor for is internal damage (kidneys, lungs, heart, brain). Are you being monitored?

My daughter and I both have diagnoses of lupus and I have extremely high antibodies for scleroderma but no diagnosis because I don't have typical symptoms. But am being monitored.

We don't want any diagnosis because we cannot take steroids, for different reasons, or Plaquenil, and the heavy duty immune suppressants are concerning. So far, with no internal damage, we are both not medicating as yet. If you did get a diagnosis, how would you feel about those medications?

Pain management clinics are not about pills. Some programs have an MD, PT, OT and behavioral health. That kind of program would also provide the listening time and understanding that can help so much for pain. I hope you can find a good one. There are also medications that might help that are okay for sobriety.

You’re not crazy at all. No one would listen to me either till I went to Mayo and the new PA I have. So when I had my test for ANA and it came back positive from my PA which I had done at Quest for labs my rheumatologist told me that there is a difference in the ANA tests from different labs. They are different brands and not all are the same. I had my blood work done at Mayo which a lot of them come back same day if not within a week. I have fibromyalgia and raynauds. I was also told by my rheumatologist just because a test comes back negative for something doesn’t mean you don’t have it. Just means the test just doesn’t pick it up. I even had a nail fold test which is one for raynauds and it came up negative. The doctor that performed the test said you don’t have Raynauds just because it didn’t look text book. My fingers don’t react as much as my toes do. I told my rheumatologist what she said and he said no you have Raynauds. I have pics. So you just have to keep going till you find that doctor that will believe you. I don’t know where you’re located but there is a doctor that will care. I would be more then happy to try and help u locate a doctor in your area. 🙏❤️

Thank you so much for your kind words.