Blood work and misdiagnosed!?!

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.

Where is your pain?

I hear you loud and clear. I have been in serious, chronic pain for over three and a half years. I thought it was related to a back injury dating back to 2016. That was under control with meds and spinal cord stimulator until 2021 when all the pain came flooding back. Bloodwork? Fine. MRI? No problems. X-rays? Nothing out of the ordinary. EMG(nerve study)? Just some neropathy. Had a pain pump implanted in 2023. It's supposedly the gold standard for pain control. For me it has not done a thing. My new pain doc who manages the pain pump will not investigate other avenues of possible help. Fortunately (I guess), I took matters into my own hands and found a new Pain doc who is looking into other things that might help. They are not really things that will pinpoint the causation and cure for my pain...just bandaids.

I know this doesn't really help you. I am pretty much diametrically different from you: male and 77 years old. However, I want to suggest that you keep on searching. Be your own best advocate. Get second, even third opinions. Get another doctor, one who will really listen to you. I had such a guy back in 2016-2017. He listened, tried different things, and was generally empathetic. Unfortunately, he retired and it has been very difficult to replace him. I wish you all the best on your journey.
PS. I am going for a trial of a new spinal cord stimulator in about ten days. Hoping for at least some pain relief.

The location and type of pain you experience is an important part of your history. If it is muscle and joint or spinal that would direct you to rheumatologists.
Some patients with minimal signs of psoriasis such as
subtle nail or scalp disease have severe psoriatic arthritis even involving tendon and the spine. There
is no specific blood test for PsA. Not all inflammation
shows on X-ray. Ultrasound can be helpful. Have you ever been under the care of a dermatologist?

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....

I agree find a another doctor
You have to keep speaking up for yourself. I am of the same line of thought.

I tell my doctors I don’t want you to throw pills at the symptom. I want you to find out what’s causing the problem.

Pain management is a joke. I decline it all the time. I educate myself on the issues and ask my doctor the questions have. They Have to ANSWER YOU.
If. your doctor Won’t listen or give u proper answers then This is not the right fit for your healing plan .

The following is just my PERSONAL OPINION:
I’m sorry, but the healthcare field has become healthcare business. There is no money to be made if doctors cure their patients . I have done research and found articles about doctors who give patients unnecessary medicine. Then the drug representatives give the doctors incentives to write for the newest new drug whether u need it or not. 😡😡to make money and there is And then, when you get sick from the medicine, they have another one for the side effects. I’ve also encountered articles where the doctor with holds the necessary medicine keeping the patient sicker. After all, they need the patient to keep coming back. Time after Time. Bottom line keep fighting for yourself.

A suggestion is to go to MAYO CLINIC for real answer

There are good doctors out there. Just few and far in between
answers.
sending you wishes for improved health and prayers to almighty to grant you healing amen

@seniorlady7 What you say about healthcare today is so true...and so sad. And we, the patients, suffer (and even die) because of it.

And you are right...there are some good docs out there. I have been blessed to have been treated by a few. But they definitely are few and far between. So good luck trying to find a really good one!

Thank you.

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