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How Long Did Everyone Wait For A Diagnosis? I’m Still Under “suspected RA”. Now Left With Pain Management Team! Feeling So Frustrated Now!

A myRAteam Member asked a question 💭
Glasgow, UK

Been seen by Rhuematology, orthopaedics and occupational health. Also attend physio! Apparently my bloods seem fine though and only moderate inflammatory markers! Shame they never do these tests during flare ups! I don’t sleep and it is now interfering with my work! I’m at my wits end and just don’t see a solution or way out of this or that I will get any help at all! This is nearly 5 years since I was first referred to rheumatology!

November 14, 2024
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A myRAteam Member

Seems like you might need to see another rheumatologist.

November 14, 2024
A myRAteam Member

It sounds like you're going through a very challenging time. Here are some insights from others who have experienced similar frustrations:

- Wait Times: The average wait time to see a rheumatologist in the U.S. is 44 days, but some patients, like Gideon, have waited over seven months for an appointment
- Diagnosis Delays: Show Full Answer

It sounds like you're going through a very challenging time. Here are some insights from others who have experienced similar frustrations:

- Wait Times: The average wait time to see a rheumatologist in the U.S. is 44 days, but some patients, like Gideon, have waited over seven months for an appointment.
- Diagnosis Delays: Many patients experience significant delays in getting a diagnosis. For example, one patient mentioned it took years of advocating for proper exams before being diagnosed.
- Multiple Specialists: It's common to see multiple specialists before getting a diagnosis. One study found that almost half of RA patients spoke with two doctors before seeing a rheumatologist, and 21% saw four or more specialists.
- Misdiagnoses: General practitioners can sometimes misdiagnose RA or attribute symptoms to other conditions, leading to delays.
- Patient Advocacy: It's crucial to find a doctor who listens and to be persistent. Elizabeth, for instance, had to search for a doctor who would take her symptoms seriously.

Consider asking to be put on a cancellation list for earlier appointments, and don't hesitate to seek second or third opinions if you feel your concerns aren't being addressed.

November 14, 2024
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A myRAteam Member

Jamielee and Lisa same here! I was told I was seronegative but my newer rheumatologist is wondering if I have RA! I’ve had my diagnosis for 10 years and have pain and deformities in my hands and wrist and feet. My entire spine has spinal stenosis and degenerative disc disease. I think she thinks I have OA but not doing much for that. I can be in constant pain and my markers are negative.

I just keep going and doing my best is all I can do.

Hope you both feel better

January 26
A myRAteam Member

I currently feel the same way. I having been seeing a rheumatologist for 4 years, with suspected seronegative rheumatoid arthritis but haven’t received a diagnosis.

January 26
A myRAteam Member

It’s very frustrating I know, it took me having bloodwork done on my own to get a proper diagnosis of RA, I knew I had some sort of autoimmune disease but I couldn’t get confirmation or treatment, that was roughly 5-6 years.
You have to advocate for yourself don’t give up, and finding the right doctor that looks at all of your symptoms and bloodwork to make a diagnosis is key.
Don’t give up.

November 15, 2024

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