Ok so I posted last week about how this internist/rheumy was basically dismissing me because I need to lose 50 pounds. My actual internist referred me to him (because he's on the insurance plan) and she feels I'm seronegative. Anyways I went to see her (my regular doc) today and she wasn't impressed with this rheumy and wants me to get a THIRD opinion. She still feels this is RA and she says she wants me to get on something called Methotrexate? I guess regular internists cannot prescribe it or something.
So two questions- has anyone had to go to three or more doctors to get the help they needed? Did your insurance cover three different rheumy visits?
Has anyone taken Cymbalta? Did it work for you?
I feel like I'm a hamster in a spinning wheel. The first rheumy said "blood work is normal so you must have fibro." The second said on the first visit "You're the poster child for RA" and when my labs came back normal he changed his story and said "Well it must just be your weight" Now I'm going to a third one and I feel like they'll think I'm nuts. :(
my first told me that I "had a virus" because of my perfect tests.. everything was normal prior to seeing him and when I saw him Except my ANA which was 1:640.
needless to say, I tried someone else... and this RD is very good ... very quick to DX when he drew fluid from my knees with no knee cap!!
dont' give up.. you know your body!!
If you read here for a bit, you will find that many of us have sero-negative RA and have been diagnosed by competent Rheumys. There are other criteria than the blood test that indicate RA. My first Rheumy, many years ago, put me on pred for a short period of time and because it helped me, said it was almost certainly RA. So, please go to the third doctor and see what he finds.
My ra is kind of crap too! first i was told i had lyme's disease, than after taking all of the meds for that, the pain was actually worse afterword's. my ana, sed rate are all normal but I have an elevated rf. after normal mri, ct scan and bone scan rd says it must be ra and gave me meds for ra, which i have not started because i don't feel like i have an actual diagnosis. My ankles, feet and knees are excrutiatingly painful but I have no swelling. I completely understand how you feel. There is only one other rd around here and my insurance does not cover her!
I know that it's frustrating, but I would try a third RD. I was fortunate in that I was already seeing a great RD (for fibro) when my RA symptoms started, but many here have had a much longer road to diagnosis.
Methotrexate (often abbreviated as mtx) is one of the first-line DMARD's for RA. Although I would think your internist could prescribe it, I'm sure they would prefer you to be properly diagnosed and monitored by an RD. Cymbalta is an anti-depressant, and while that might help with pain, it is not going to stop the disease process. I tried it and didn't have any success, but we are all different.
If you are concerned about the insurance coverage, call them and ask about it. If they balk, have your GP contact them with their recommendation of a third opinion. And just don't take "no" for an answer.multiple opinions epecially in the case of a disputed dx is not unusual. If insurance is a probelm pay for the office visit out of pocket and let your internist prescribe any tests that the rheumatologists wants
[QUOTE=reegie] My ankles, feet and knees are excrutiatingly painful but I have no swelling. I completely understand how you feel. There is only one other rd around here and my insurance does not cover her![/QUOTE]I had no swelling either but I was in a lot of pain and had an RF of 710.
I literally could not move, a basket case.
I was lucky to be DX'd almost immediately by the first RD- it only took a few weeks of be tested for everything under the sun. At first all I showed was extremely high inflammation levels but then all the right joints swelled to enormous size, were red & so hot they were sweating.
RD was a real jerk however and had to change to RD 2 whom I like a lot.
Good Luck. You need a good fit and to feel confident with who you use.
My RD still puts "monoarthritis" as my DX at each visit, even though I've been on MTX for more than two months. Long story, and it's not really just one joint, but sufficie it to say this is complicated. I am RF and anti-CCP negative, although I had an elevated ESD and CRP (which are inflammation markers).
My primary referred me to Stanford Arthritis Clinic and they said my labs were normal so I couldn't have RA even though I had finger and ankle symptoms. Acute flare hit 5 years later and I was wheelchair bound with an RF of 972, saw RD but no therapies helped. Saw 3 RD same thing. Saw 4th RD just a change in treatments with little help. Pred was the only thing that helped. Finally, on the 5th try I found an aggressive RD and it's taken us 3 years but I've finally achieved clinical remission. This has been going on for 10 years and 5 RDs.
So my answer to you, yes, go see the 3rd RD and arm yourself with knowledge about seronegative RA. Ask hard questions, it's your body and you deserve answers. Good luck , Lindy
Thanks everyone! :) I know that this Complement C4 test was high but the Rheumy I saw said "oh that means nothing". I also know that when I was on Prednisone it took my SED rate down but since it was always in range they didn't look at that. I just hope they can do something, anything to help me function better. I'm doing my part in losing weight I just wish they could do theirs.... ;)
Definitely seek another opinion. I am seronegative, but given my symptoms (initially presenting with pain, stiffness and swelling in all the knuckles in hands and feet, overwhelming fatigue, family history of RA) my rheumatologist has said that it is RA until proven otherwise.
WoW! Well I have been through that all too! Everything from weight, double jointed, just sick, fibro, told my mom I was "making it up", ect. You know your body get the information you need, and find the right doc. Goodluck! Its not easy to find one, sadly. But they are out there. I wish you the best of luck and you are in my prayers!Thanks all - I just got my referral in the mail and I'll be calling tomorrow to set up an appointment w/ this rheumy. He's at Emory University (Georgia) and he's had 19 years of experience so the online site says. I'm also taking my hubby w/ me to kinda have a form of back up support. I sure hope this guy will listen!!
Monet, excellent idea to take your hubby. He can also share anything he's observed. Also, if there are any days where you're really swollen, take a picture and bring it to the doc...it's worth a thousand words!
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