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jennab

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Joined
Apr 4, 2016
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Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
Minnesota
Hello everyone. This is my very first post! I have an appointment (again) with a rheumatologist tomorrow so wanted to get some advice. My GP thinks I may have fibro.

So this all started back in July 2014 with what was back pain. Did chiro, got a little better, then got bad in my legs as well. Had MRI and they decided it was due to bulging disc so sent me to PT. Did that for awhile with no help. Just decided to try and deal. Sometimes pain was better, sometimes worse. Never fully went away but I could deal most days. A year later got really bad again and decided to get a cortisone injection. At the time I thought it helped but literally left for vacation 2 days after (in hindsight I think it was the vacation that helped). A month later pain gets really bad again so they do another injection which didn't help the pain at all.

So then GP refers me to neurology which they do an MRI of my neck, most likely looking for MS. Also did an EMG which shows normal. Go back to my GP and they do blood tests. Positive for ANA and high in something else so referred to rheumatology. She tells me I don't have lupus or RA after doing other tests and refers me to ortho... again... Had another back MRI which shows the same as the first. They say it's low back pain due to disc and maybe hip bursitis because they can't figure out why I have pain on my left side (right side made sense due to disc bulge placement). So try PT again for awhile. Still in pain.... Pain seems to be just getting worse and more bad days now.

So GP on Thurs said maybe it is fibro, pressed some points on my body which hurt and is sending me back to the rheumatologist since they would diagnose. Looking back I think of all the dr appointments I've had and it might make sense. I went in a few times for neck/shoulder pain and they would just give me muscle relaxers and say it was due to stress. That along with my bad leg achy/pain, back pain, hip pain, headaches, constant fatigue may make sense.

So sorry for the long story but wanted to give some history. I'm so afraid of going to the Dr tomorrow and for her to tell me that there is nothing wrong and it's not fibro (not that I want it to be but honestly what else is it at this point?). I just want a diagnosis so I can move on and try to figure out a strategy to make things better. Any suggestions for things to do before the appointment, or things to ask, bring up?

Thanks for your help! I didn't know who to ask. My mom has fibro but just said they pushed on her and gave her the diagnosis right away so didn't have to spend all this time like me going through so many hoops to rule out everything else
 
Hi jennab, welcome, we are glad to meet you

You have really been on a long journey with lots of testing!

When I was diagnosed I wrote out 5 or 6 questions ahead of time so I wouldn't forget.

Whatever the diagnosis is, you might want to ask the doctor why they think that's what it is. My rheumatologist initially thought I did not have fibromyalgia because I had swelling in my hands. She thought I might have scleroderma. She ordered more blood tests to confirm, but they came back negative, so she changed her mind. For me, knowing her thought process helps me feel more confident about her diagnosis.

Other good questions are to ask about treatment and prognosis. Whatever the diagnosis is, it should point the way to a treatment that will help you.

Good luck with your appointment!
 
Thank you, that is a good idea to write down some questions or symptoms. I always have everything in my head I want to say but of course when the dr comes in I forget most of it! She did explain why she thought I did not have lupus so will see what she says this time.
 
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