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Possible Autoimmune…undiagnosed
Autoimmune Diseases | Last Active: Jul 24 6:05pm | Replies (58)Comment receiving replies
Undiagnosed rheumatoid arthritis
I'm wondering if anyone has gone through anything like this. I was diagnosed with bilateral osteoarthritis in my hands in 2021. They prescribed me celebrex. I've just been taking it everyday for the last 3 years. 2023, I'm getting back injections for a old injury and nothing is working and the pain is more widespread. MRI shows arthritis in lumbar spine. Pain management doctor suggested a Ra test. It's negative. I know something is wrong. My grandmother and my aunt have Ra. I beg for a referral to a rheumatologist. 3 months away. I find a rheumatologist that will see me. He diagnosed me with bilateral bursitis and fibromyalgia but not Ra. Tests are negative. I'm in so much pain. He gives me hip injections. That helps! He tells me I have bilateral osteoarthritis all over my body at 40 years old. I've already had my records transferred. I know there's more. I stop the celebrex. I missed a dose for 7 hours and I blew up, turned red, hot and the pain. This i guess sent me into a bad flare. To the point I have loss of appetite and nausea so bad. I ended up going to the ER a couple of days ago I haven't eaten and have been nauseous for 2 weeks. I've lost 25lb in a month. They believe I have RA in my stomach and that the celebrex is suppressing my inflammation markers.I have it in my hands, feet, knees, elbows, lumbar spine, and cervical spine. I have gum disease, light sensitivity, vitamin d deficiency, finger and toe deformity, and a dry cough. I still have the appointment I made 3 months ago. I'm not going to take the celebrex before I see her. Someone has to see me! This is going to kill me if they don't help me! It's taken me 7 months of fighting with doctors to even get here.
Replies to "Undiagnosed rheumatoid arthritis I'm wondering if anyone has gone through anything like this. I was diagnosed..."
@akelley, I'm tagging @melissawolfe1981 to make sure that she sees both your posts, including the one with more of your story that I moved here.
I'm so glad that you have an appointment with a rheumatologist next week. I recommend preparing a few things for your appointment like creating a list that includes:
- Detailed descriptions of your symptoms
- Information about medical problems you've had in the past
- Information about the medical problems of your parents or siblings
- All the medications and dietary supplements you currently take and have taken in the past for this problem
- Questions you want to ask the doctor
Prayers for you🌻 the frustration alone with trying to get answers or to see specialists is insane & knowing something is wrong but most drs seem like they just want to put a band aid on it & that’s it. You have to keep fighting…that’s all we can do at this point. I just got home from my drs visit & told him I would take the Effexor he so badly wants to prescribe but I want to be seen my specialists such as a rheumatologist, immunologist & a psychiatrist. He was in shock & didn’t have too much to say except more than likely they won’t see me because my labs are normal. That’s when I explained to him he needs to push for me to be seen. I’m so sorry you’re going through this & just remember you aren’t alone🌻❤️
My Ana, sed rate, esr, and complement C all elevated showing severe inflammation and autoimmune problems. My lupus and RA test all negative. I have a strong family history of RA.
Grandmother, aunt, mother, nephew was born with juvenile RA. The rheumatologist did ultrasound because I told him I seriously believe I have it. On the ultrasound RA nodules were found in my wrist, hands, fingers and elbows. I am finally being treated for RA. My blood work has always been funny. He finally did ultrasound because I told him sometimes I would get blisters on my joints.
Go to a neuromuscular neurologist and have a small fiber biopsy and EMG/nerve conduction test done.
Read my comments mine diagnosed by ultrasound. RA nodules found but all my autoimmune markers are high.
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I hope you are now taking a lot of Vitamin D!
In this murky area of medicine, I think it helps to focus on symptoms rather than diagnosis.
I have had a rheumatologist for decades and a diagnosis of lupus, but a functional/integrative medicine doc has been more helpful in the long run.
Are you hoping for steroids or other immune suppressants? I don't want those anyway. Plaquenil doesn't do much for me. So what does a diagnosis actually do for us?
The integrative medicine doc has me trying curcumin, CBD and some other things. PT and OT can help. Tai chi is good for me and loosens things up. Many things to try and hope something works for you.