1. < Autoimmune Diseases

Blood work and misdiagnosed!?!

Posted by leslieb24 @leslieb24, Oct 6 3:04am

Kinda long, but I was diagnosed with psoriasis when I was an older child, 12 or 13 I think it was. I am now 31, female for reference, and I am at my wits end! As a teen and young adult I self medicated for pain because no one took my pain seriously, including my parents, but I became sober when I was 19. Since then I have spent years attempting to get doctors to listen to me about my pain and my body. I have seen 4 rheumatologists who have all done the same tests including ANA, ANA titer, Sed rate, all of the big tests. Most of them come back abnormal but when I do a follow up and some of the blood work comes back normal I get told nothing is wrong and they send me on my way. This time the rheumatologist literally goes "it'll take a few weeks for most of the blood work to come back, but so far everything looks fine, I can't see anything wrong but I will send you to the pain clinic for pain relief." I DON'T want pain pills, I want help. I need someone to listen! The blood work came back this morning and of course as always my ANA is abnormalities, my titer is high, my SED rate is normal but on high end, my C3 is high, etc etc. I messaged my doctor with the response of "follow up with pain clinic and take a multi vitamin." I am so heart broken, I just want my life back, I want to be able to chase my daughter and nephew around. I just want normal or at least answers. Please tell me I am not crazy and if there is anyway absolutely possible to get them to actually listen to me!!!!!!

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heisenberg34 | @heisenberg34 | Oct 7 10:00am
In reply to @seniorlady7 "I agree find a another doctor You have to keep speaking up for yourself. I am..." + (show)
@seniorlady7

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

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I have to agree with you 100%. "Pain mangement" in my expereince doesn't really mean much. Just another doc with a fancy shingle to hang on the wall. The few I have had are not willing or able to take the time to actually manage my pain, let alone actually diagnose it. That would take too much time. They have only that ten to fifteen minute to greet, look at my chart, try to remember who you are, and then say "Make a new appointment at the window". My current pain doc has so many patients waiting in ten or twelve different rooms, I'm amazed he can spend ten minutes with me. I guess the Medicare allowance for dozens of patients adds up in the long run.

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windyshores | @windyshores | Oct 7 11:27am

I just went to my rheumatologist who confirmed they basically are looking for internal damage. Pain and a positive blood test, even a highly positive one, won't get a diagnosis or treatment. We all want answers but a diagnosis with internal damage means heavy duty drugs. I stopped the search for answers for 25 years and only went to rheumatology again because I had very high antibodies for scleroderma and a big sudden drop in kidney function. I have a long term lupus diagnosis and get sick in the sun but the diagnosis doesn't get me any care (I can't take Plaquenil). I think a lot of energy and angst goes into getting an answer. Annual monitoring- whether by PCP or rheumatologist- is really all that we need (until we need more). My rheumatologist wasn't interested in treating my pain level of 7, but also wasn't dismissive, the best I have found in the field.

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cher51 | @cher51 | Oct 7 11:31am

Have you had xrays to see if you have arthritis?

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1 reply
windyshores | @windyshores | Oct 7 11:34am
In reply to @cher51 "Have you had xrays to see if you have arthritis?" + (show)
@cher51

Have you had xrays to see if you have arthritis?

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@cher51 who are you asking?

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anonymous620 | @anonymous620 | Oct 7 5:40pm

Weight loss may help if you are overweight even a little. Everything improves.

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anonymous620 | @anonymous620 | Oct 7 5:41pm

Weight loss may help for any amount overweight, even a little. Everything improves.

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kenyalama | @kenyalama | Oct 7 9:02pm
In reply to @windyshores "I am not sure how high your ANA titer is, but I have been told that..." + (show)
@windyshores

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.

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I have RA and Sjogren’s with only Sjogren’s antibodies all neg otherwise but as good rheumatologist state, my body “tells it all”
Synovitis, multiple joints swollen and painful, anemia, severe dry eyes and mouth, RA nodules keep fighting for a good specialist, try an educational institution. Good luck! Do NOT give up
Anny

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2 replies
windyshores | @windyshores | Oct 8 4:24am
In reply to @kenyalama "I have RA and Sjogren’s with only Sjogren’s antibodies all neg otherwise but as good rheumatologist..." + (show)
@kenyalama

I have RA and Sjogren’s with only Sjogren’s antibodies all neg otherwise but as good rheumatologist state, my body “tells it all”
Synovitis, multiple joints swollen and painful, anemia, severe dry eyes and mouth, RA nodules keep fighting for a good specialist, try an educational institution. Good luck! Do NOT give up
Anny

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@kenyalama thank you . I have a top rheumatologist at a top teaching hospital. I just can't take any of the meds that are usually used. My point was that a diagnosis can be desirable and terrible because treatment is no fun. What meds are you on?

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elisabeth007 | @elisabeth007 | Oct 9 3:31pm
In reply to @kenyalama "I have RA and Sjogren’s with only Sjogren’s antibodies all neg otherwise but as good rheumatologist..." + (show)
@kenyalama

I have RA and Sjogren’s with only Sjogren’s antibodies all neg otherwise but as good rheumatologist state, my body “tells it all”
Synovitis, multiple joints swollen and painful, anemia, severe dry eyes and mouth, RA nodules keep fighting for a good specialist, try an educational institution. Good luck! Do NOT give up
Anny

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i have found Cequa (rx) eye drops really help with severe dry eyes

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slkanowitz | @slkanowitz | Oct 10 8:35am

I dittp the advice to go to your local university hhospital rheum clinic. Since thy are a teaching hospital thyare up on the latest and spend more time with you. They tend to be more thorough and helpful, setting an example for the residents. You essentially get 2 drs, the attending doc with experience and the resident, eager to delve into your case and learn. You may need a referral from PCP. Good luck. It’s so frustrating to be dismissed and your high ANA and C3 means something!

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