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LoolooLoopus
New Member


Date Joined Apr 2015
Total Posts : 8
   Posted 4/26/2015 9:33 PM (GMT -6)   
A few years ago I was on Healing Well, and I've recently come back, so I don't know a lot of people! But lately I've been more proactive in the community and have been more open to sharing. So, I wanted to share some good news.

The short story is, several doctors said that my symptoms and positive ANA pointed to Lupus or RA. Well, RA was later ruled out, but all the doctors that told me it looked like Lupus were either FNPs, worked at my school clinic or in the hospital, or weren't GPs.

Everyone suspected it was Lupus, and all the symptoms matched. I agreed. But I needed it in writing.

So I got a GP. He ran one series of tests, did one X-ray, and labeled me with Fibro. He then proceeded to take me off of one of the most helpful medications I'd ever had, because he said I was too young to take a benzodiazopine. I was in a crappy relationship at the time (which I am now out of by choice) and was having terrible panic episodes. I won't get into the whole explanation, but his advice was to think of my father when I was upset to manage my anxiety...my father who committed suicide by pills/alcohol when I was 9, the same day my grandpa also ended his own life with a gun. I told the doc this, but he didn't suggest anything else. Also, he took me off the drug very abruptly, and I had been taking it for months, so that's really dangerous. (I was fine, luckily. Later I went back on the drug and eventually sought self help in managing my anxiety. I worked hard and took myself off of the drug when I was ready. Haven't needed it since!) :-)

At any rate, he just wanted to diagnose me and be done after one series of testing. So I've been walking around with a misdiagnosis for years. I got a way better GP, but I couldn't see him for 3 months at a time because he was booked. I had an appointment last week, and when I walked in, the office claimed to have called in February to cancel my appointment by leaving a message. (They didn't.) I was absolutely not okay with not seeing my doctor for 6 months at a time. My refills only last 3 at most, and I had been hospitalized since last I saw him. So I told them to get me in with someone else.

As I was sitting in the room, the most beautiful Indian woman I've ever seen walked in. She had the traditional nose stud, and thick black eye liner. She just wanted to make sure I was taking my meds for the right reasons before refilling them. Before she ordered the refill, she told me that I needed to have a plan for getting a new Primary. She also said that her advice, since I was misdiagnosed, was to get more tests done, and current xrays (I also have scoliosis.) She told me exactly what she'd order for me. She even asked me a few questions about my symptoms regarding whether or not it's Lupus. No doctor has EVER sat down to do the verbal test before. Ever. She wasn't only curious, she was helpful.

All I could think was "Adopt me?" So, I have a new GP! And I'm finally on the path to getting my diagnosis fixed. I still can't believe the opinions of all those doctors and medical staff were thrown out by one person because he was too lazy to run more tests. I'm very happy this is being fixed.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/26/2015 9:45 PM (GMT -6)   
I'm happy for you!😆
Treasure this new doctor who seems to truly care.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/26/2015 11:01 PM (GMT -6)   
Glad you have a good GP!

Note that Lupus is best diagnosed and treated by a rheumatologist, GP's don't have the specialized training and experience of treating auto-immune diseases that rheumy's have.

And, I'm curious, what is a FNP?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LoolooLoopus
New Member


Date Joined Apr 2015
Total Posts : 8
   Posted 4/27/2015 3:09 AM (GMT -6)   
Lynnwood said...
Glad you have a good GP!

Note that Lupus is best diagnosed and treated by a rheumatologist, GP's don't have the specialized training and experience of treating auto-immune diseases that rheumy's have.

And, I'm curious, what is a FNP?


Thanks for the sentiment Lynnwood! I'm having some issues with my insurance right now that's making a rheumatologist impossible to see until the problem is fixed. Which should be in a week or two!

An FNP is a Family Nurse Practitioner. All the FNPs I've dealt with have been amazing, better than many doctors I've been to, probably because of their background in dealing with youth and families (and when I started getting diagnosed, I was 18.)
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