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How Long Has Everyone Had To Wait For A Diagnosis?

A myRAteam Member asked a question 💭
Ridge Spring, SC

How long has everyone had to wait for a diagnosis?

I spent most of 2015 feeling run down and sick. I thought it was stress and didn’t push things until in October during a trip my hands started aching constantly. I started dropping things and having trouble opening things.

I bounced between six specialists ruling out muscle disorders, carpal tunnel, and osteoarthritis before finally demanding a referral to a rheumatologist. Another month of xrays and tests and a round of prednisone later, it’s… read more

June 1, 2016
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A myRAteam Member

I had severe pain in my shoulders for a few weeks. I was convinced I was sleeping funny and brushed it off. One morning I awoke to frozen shoulders - couldn't lift my arms above my head or away from my body (imagine how much fun it was trying to brush my hair that morning LOL). Enter four specialists, two physical therapists, and a worker's comp doctor who was adamant that I had just "fallen off a horse" ... yeah... cause that's something I would forget.

Long story short, took about 8 months to make a diagnosis. All they did was a simple full panel blood test (three separate times) and had confirmation. Wish they had just started with that...

June 4, 2016
A myRAteam Member

Yes it certainly helps to have a knowledgeable "GP" general practitioner. Mine knew right away when he saw my swollen fingers & felt how warm they were. Then it took about 3 mos. to get an appt. to see a rheumy. I hope that your next rheumy helps you [take a list of questions] and that you can have your xrays forwarded to them so you don't have to be xrayed again. My rheumy sends me for xrays every year which I don't like but understand the reason why. It would be helpful if you could have someone accompany you to the appt. who can take notes.

June 2, 2016
A myRAteam Member

I've been to several doctors here; they prescribed pain meds and send me home. Well could as well taken tic tacs... The actual diagnosis was made abroad by my old doc that cared for me since childhood. All in all it was a good year, but take away the visits to local GPs it was diagnosed within 5 min at my doc over in Germany. So it all comes down to find a knowledgeable doctor.

June 1, 2016
A myRAteam Member

About 2.5 years ago I had pain in my right foot and left ring finger that wouldn't go away. X rays showed nothing. It lasted a couple of months. A few months after that the pain came back and in more places. I felt like I had the flu. Very tired and run down, achy, sore joints. Doctor tested thyroid and it was fine (to note a few years before I'd been hypothyroid, levels came back to normal with synthroid, and at this time I'd been off synthroid about a year and still fine) and then suggested I see a therapist. So I did and was told I seem fine emotionally to her. That lasted about 6 weeks. On and off for awhile I would be stiff and have sore joints but since I was getting nowhere with my doctor I gave up. I also had recurring infections, kidney and UTI's, and pneumonia. Flash forward last month I thought I hurt my back at work (retail and have a previous herniated disc) or aggravated the old injury. Within 2 days my entire body hurt on and off in all places randomly. Finally caved and called the doctor and she tested my thyroid which is again low. She put me back on synthroid along with nsaids. Ended up going to emergency a few days later, after several hours of pain, chest pain, I was diagnosed and told I should be referred to a rheumatologist.
Funny enough I saw my doctor again a week later (she'd been on holidays) and she honestly seemed annoyed that they diagnosed me and asked how they came to that diagnosis. I'm not yhe doctor here.. so we went through my long history. She then said it was probably just my thyroid because it was low again. I reminded her that a lot of this happened when my thyroid levels were normal. She then finally referred me to the rheumatologist and said I would need more extensive testing to look for a potential connective tissue disorder. I don't really know that that means but am waiting on that appointment.

July 10, 2016
A myRAteam Member

I was told some form of arthritis. Since then I've changed Rheum and see the new doctor in July.

June 2, 2016

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