Frustrated!
I finally have decided to write a journal entry on this site...read at your own risk.
I am having a horrible time getting a diagnosis. It's been two years of swelling, pain (off and on at least and not horrific), test results that show nothing except a small amount of inflammation, and changing diagnosis.
After an MRI in March I called the rheumy to ask about results and ask about doing the other hand (they had messed up the order) and the receptionist told me I "didn't need to have the other hand done since it was RA." I accepted this- and thought it was the diagnosis. My next appt in May- doc wasn't prepared to say but said I could do steroids for 2 weeks or Plaquenil for 6 months and we'd likely know for sure.
I go back in August, she is leaning toward RA with symptoms but not of course with bloodwork. I go last month and they do all bloodwork again and find only the inflammation and it's not that high. By now my joints in knuckles of hands and toes are swollen, as it my right jaw (doc asks if it might be tmj- I tell her the dentist said "no"), ankle and knee (right side again) are swelling and painful. She looks at it, sends me for an xray- says it may need to have mri. Office calls me, says nothing about mri after I ask and tell them I've been told that- also says my WBC is low and that's not uncommon for RA. Odd because I don't think they think I have RA-doc has committed only to "inflammatory arthritis".
I had them mail me the results of xray and blood(also it says RBC is low) and know this isn't an easy process. My issues are...I feel more could be done to figure it out, I feel I'm doing a lot of the work to figure it out, I am concerned about Plaquenil IF I DON'T EVEN HAVE RA, WHY THE HECK AM I TAKING IT? I had my second big eye appt this week and it occurs to me again, if it's just "inflammatory arthritis" which is my latest diagnosis, and the Plaquenil isn't good for me (no drug is if it's not needed), why am I taking it? I do think it helps, but again doc said it would more or less prove RA or not RA. She also said 2 weeks of steroids would prove it as well. I declined then, but thinking it might be worth a try to figure it out. I just think it's a tough drug (rash now also, waiting to hear back and hoping it goes away) if it's not needed.
My goal is to try and let this go~ and go more with the flow, but really not feeling very good about any of it. I do read from here and different areas and many, many people are struggling with pain so much worse. I feel bad being frustrated.
I've thought of trying for a second opinion but my primary's office discouraged it...also if I do that, then I think I'd have to have my current rheumy send my records, which would damage our relationship I guess. I do read and know many go years without knowing for sure...and if it wasn't for the drug(s) I might be more accepting of it.
Kind of a mess...
I am having a horrible time getting a diagnosis. It's been two years of swelling, pain (off and on at least and not horrific), test results that show nothing except a small amount of inflammation, and changing diagnosis.
After an MRI in March I called the rheumy to ask about results and ask about doing the other hand (they had messed up the order) and the receptionist told me I "didn't need to have the other hand done since it was RA." I accepted this- and thought it was the diagnosis. My next appt in May- doc wasn't prepared to say but said I could do steroids for 2 weeks or Plaquenil for 6 months and we'd likely know for sure.
I go back in August, she is leaning toward RA with symptoms but not of course with bloodwork. I go last month and they do all bloodwork again and find only the inflammation and it's not that high. By now my joints in knuckles of hands and toes are swollen, as it my right jaw (doc asks if it might be tmj- I tell her the dentist said "no"), ankle and knee (right side again) are swelling and painful. She looks at it, sends me for an xray- says it may need to have mri. Office calls me, says nothing about mri after I ask and tell them I've been told that- also says my WBC is low and that's not uncommon for RA. Odd because I don't think they think I have RA-doc has committed only to "inflammatory arthritis".
I had them mail me the results of xray and blood(also it says RBC is low) and know this isn't an easy process. My issues are...I feel more could be done to figure it out, I feel I'm doing a lot of the work to figure it out, I am concerned about Plaquenil IF I DON'T EVEN HAVE RA, WHY THE HECK AM I TAKING IT? I had my second big eye appt this week and it occurs to me again, if it's just "inflammatory arthritis" which is my latest diagnosis, and the Plaquenil isn't good for me (no drug is if it's not needed), why am I taking it? I do think it helps, but again doc said it would more or less prove RA or not RA. She also said 2 weeks of steroids would prove it as well. I declined then, but thinking it might be worth a try to figure it out. I just think it's a tough drug (rash now also, waiting to hear back and hoping it goes away) if it's not needed.
My goal is to try and let this go~ and go more with the flow, but really not feeling very good about any of it. I do read from here and different areas and many, many people are struggling with pain so much worse. I feel bad being frustrated.
I've thought of trying for a second opinion but my primary's office discouraged it...also if I do that, then I think I'd have to have my current rheumy send my records, which would damage our relationship I guess. I do read and know many go years without knowing for sure...and if it wasn't for the drug(s) I might be more accepting of it.
Kind of a mess...
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