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Lacking a Diagnosis
I'm a 70-year-old man with apparent auto-immune symptoms, but no clear diagnosis and am at a loss as to what to do.
Seven months ago I had a sudden onset of pain consistent with PMR in my legs, neck and hips, as well as extreme fatigue and mental fog which has continued despite two rounds of Prednisone treatment. My blood tests were consistent with RA (anti-CCP of 250 and relatively high Rheumatoid factor).
My Rheumatologist initially suspected RA and then perhaps PMR but ultimately discounted both because Prednisone did not help. Also, after seven months I show no RA signs in the joints of my hands and feet. I do have extreme morning fatigue and pain and a variety of other symptoms.
I'm at a loss as to what to do next, as my Reumatologist does not want to go further without a diagnosis. Is there another type of specialist I might consult or another disease I might have? I'd appreciate any advice.
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Totally understand, if you can't get anywhere with your rheumatologist. Then go to endocrinologist you need a prior authorization from your PCP. I'm sure you've talked to your PCP about it but if you haven't then that's what you need to do. You need to advocate for yourself I am telling them what test to take now. I have three autoimmune diseases I have rheumatoid arthritis, I have hypothyroidism hashimoto's and just was diagnosed with sjogren's disease. So I understand advocate for yourself go to another doctor or see an endocrinologist. They refused me so I'm seeing immunologist have an appointment Monday. And if they can't tell me what's going on to help me with my problems then I am going to demand to see an endocrinologist. Even if I have to call my insurance. Good luck
You need to be your own detective.
Do a diary of the things you do eating what you do going for walks working and salon on
See how things change for you as the day goes on fake pain better in the morning or worse in the morning. Did it wake you up at night?
Write all your questions down even some of the ones you might think of that stupid for me to put that down it could give the doctors a clue.
Have you talked to your primary doctor?
Because there are more things than just arthritis that could cause leg pain and some of the other symptoms
Be your own detective do a good diary and I wish the very best for you
Mediterranean diet always a good try for several months. Consider another rheumatologist in a teaching
center or clinic if you can.Be aware of all your labs and
Inflammation markers.
Hi Randy. I am in a similar situation. I attribute my PMR and RA pain to the 6/11/24 shingles shot but 2 rheumatologists (one at Mayo) refuse to believe it and can’t decide what I have. Lab tests show high levels of CRP, ESR, IL-6, and rheumatoid factor. I do have osteoarthritis. An endocrinologist was nice but said he couldn’t help me. I am thankful for this Mayo connect where many suggestions are offered.
I’ve been on 5 of the most common RA/PMR meds and none have alleviated my horrible pain. Currently I take meloxicam and rely on Tylenol (extra strength and PM) to get me through. They are quasi-Pain killers which take the edge off but do nothing to stop my ongoing bone destruction. I had to have a left reverse shoulder replacement last October.
Keep on researching and being your own best advocate.
I'm sorry for the lack of response from your doctor, it's unfortunately common. Did you have an ANA test? If so and it was positive, did it lead to additional autoimmune testing? I've only had a slightly elevated CCP response and none on CRP and was diagnosed with polyarthritis due to symptoms. I also have an early Sjogren's diagnosis without the standard SS test results being high positive. There are many tests and diseases that can be related to your test results- a good rheumatologist will look at those results and realize that you have high inflammation going on in your body, with clear symptoms, and that you need to be treated for those symptoms. Many people are 'seronegative' and their autoimmune disease will not show up on a test until a high level of damage has occurred. I encourage you to keep pushing for answers and consider looking for a new rheumatologist.
Thanks to each of you for your advice and support. Your suggestions are helpful and I'll pursue them. I've read about a dozen books about these diseases, but there seems so much that we don't know and each person's case is unique.
I'm glad to find the Mayo support groups and the sound advice you offer. I have follow up appointments coming and may try another round of Prednisone as well. I'll monitor this chat and report back.
Took me three times to find a good rheumatologist. If you believe there are issues, keep trying. It can take time. I have a gem now.