I was just wondering at what point did your regular doctor refer you to a rheumatologist? My sister and I both have been doing some tests (we have the same doctor) and I mentioned to her the other day that I was starting to wonder if I would do better seeing someone like a rheumatologist. We both absolutely love our doctor, but I guess I'm just not very patient and this testing process has me a little frustrated. My sister said if our doctor gets to the point where she thinks the tests are pointing that way she'll probably refer us ... is that right?
I started by going to a regular physical first( I dont have a regular doctor) and telling them the pains I was having . ( joint pains ) and from there they referred me to a Rheumatalogist I went and did all the testing for a little over a year and thats when i was diagnosed with it . so for me the testing process took a while i did blood tests.I lost count how many .i tested positive for lupus, I did x rays i was on a gluten free diet on and off for 2 months i was blood tested for celiac disease .i had an intestinal biopsy done and M.R.I .so if your just gettting started with the testing good luck and i'm here if you need to talk (:
I had a physical, and my gp did some blood tests (including anti nuclear DNA, which is a Lupus test). It was high, so he referred me to a rheumy. Don’t give up until you have a firm diagnosis. Remember, the average Lupus patient walks around with the disease for years before being diagnosed.
I was going to a dermo for my other skin disease and she biopsyed a spot that looked different from the rest. When she got the results she sent me to the rheumy.
Good luck
Cindy
My hair was falling out in patches and I went to a Dermatologist. He did a biopsy of my scalp and diagnosed me with discoid lupus about 15 years ago. He treated it with cream and he did not refer me to a Rheumatologist. About 4 years ago My scalp had a reaction again I went to the Dermatologist they did another biopsy and told me it was SLE(Lupus). It was around that time that I started seeing a Rheumatologist at the clinic and they did a biopsy and diagnosed me the same. Then they noticed I had a lot of protein in my urine(urine looks foamy or sudsy) so they did a biopsy on my kidneys and diagnosed me with Lupus Nephritis(Lupus with Chronic Kidney Disease, Stage III). Now I see a Rheumatologist and Nephrologist(Kidney Doctor) and other specialists. So see I got several diagnosis'. Good Luck and God bless.
I think its a mixed picture. I was very loyal to my doctor years suffering. My family made me go see a specialist. One visit an he knew I had lupus. There are alot of doctor who seem to shy away from lupus. Follow your gut. Can you see a rheumatologist without referral. Its your health I think we have to take ownership
have a great weekend
jj
how do you find a good one, if not through referral?
I did not really answer your question, did I? Tell your doctor that you would like to get an opinion of a Rheumatologist, especially if you are having complication. To find a good one? Your guess is as good as mine. My Rheumatologist and Nephrologist keep in close communication with each other about my treatment even though they are hour and half away from each other. I live in a small town so I had to go to a larger city to get a more experienced Rheumatologist. I had tried the two in my town. They wouldn't communicate with the other specialists. I now see a Rheumatologist in Atlanta in the Emory clinic. If you could get your specialists in the same place will be good too. But they must communicate with each other.
I was in the hospital for something else in February of this year, and the emergency room doctor asked me if I was "the one with Lupus and Sjorengen's Syndrome". I said no, because I had no idea what he was talking about. Turns out I was diagnosed with Lupus in 2009 and didn't know it because my primary never followed up (he retired that year and the diagnosis came between doctors). When I found out, I demanded to see a Rheumatologist, but it still took five months to get the referral.
I was first referred by my chronic fatigue doctor for testing , but wasn’t diagnosed. Years later, I met someone with lupus who loved her rheumatologist. 3 month wait and I was instantly diagnosed. I was much sicker by then, and had , presumably, more lupus indicating bloodwork , and lupus pleurisy. She was in a bigger city, an hour away- so was the chronic fatigue doctor. I loved her, but moved awy. I asked a woman from my church who had RA who her rheumatologist was and did she like him. I still go tim 17 years later.
I wasn’t referred by my primary I had a car accident and I was noticing after the accident My feet and hands started to turn purple and swell up I could barely walk ,I still went to work had know energy fatigue to the bone.Went to several doctors and even got know diagnose from one hospital and was there almost 2 weeks and they drawn more blood then a vampire, Finally my mom took me to Emory and within days I was diagnosed and needed 4 pints of blood ,some insurance plans don’t make you have a referral but I would find a Reumetologist who doesn’t need a referral you don’t want to be worst off by waiting.
I guess I was one of the lucky ones. I went to my primary care doc (who was in a large multi-specialty group) when I woke up with excruciating pains in my hands and arms and could hardly move. He did two very generic tests for inflammation, ESR and CRP. They were both significantly elevated, and he referred me to the rheumatologist in the medical group. First visit to her, she did the ANA which was positive and the reflex tests that diagnosed Lupus. All happened within 30 days.
There were two rheumatologists in the group, and I asked one of my friends (who has Rheumatoid Arthritis) which one she went to, and she told me which one she preferred since she had seen both. Personal references are the best way.
Personal references are the best. My PCP's nurse has recommended me to 2 of the specialists I have and I like them both.
Take care everyone.
Cindy