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I don't know where to turn please help
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An_257169 posted:
Hello everyone I'm an 18 year old female soon to be 19. Since about the age of 16 I've experienced strange episodes of extreme fatigue, joint pain, rashes, and fevers (sometimes including costochondritis with no explanation) that would last for about 10 days. My doctor could find never find anything wrong with my basic blood work and never really look further into it until may of last year (2013 age 17) when I became extremely photosensitive and had a large amount of abnormal bruising she decided to run a ANA test which came back positive. After the results where back I was referred to see rheumatologist who assumed it was Lupus but wasn't ready to officially diagnose me with it. As this past year went by my symptoms have became much worse and frequent as well as new symptoms such as mouth ulcers, raynaud's, malar rash also my joints have been locking up and pinching and I have to try to pop them to be able to move them normally again. I've also had random times when large amounts of billrubin, protiens, and ketones show up in my urine. Yet during these flares(which have been occurring at least once a month now and sometimes last for weeks) my blood results are all normal besides my ANA. And because of this my rheumatologist still doesn't want to officially call this Lupus. Yet when I take prednisone during a flare I get amazing relief. My rheumatologist believes I have fibromyalgia as well and sometimes believes that it's not that Lupus that's flarring it's the fibro despite the fever, mouth ulcers, and rashes. Which is frustrating to say the least because I know the difference between fibro or cronic pain and the pain I have during a flare. I take a few different medications daily for fibromyalgia and a anti inflammatory but yet my cronic pain will still effect me daily. When I brought this up with my rheum he referred me to his pain management doctor, who later told me he would not see me because of my age (18). After being rejected by the pain specialist only due to my age my rheumatologist suggested I see a psychiatrist saying that he believes there's a strong psychological component to what I've been experiencing despite all the visual symptoms I have like rashes ulcers and fevers. I feel like he is getting frustrated with me because during these flares my blood work is normal. So now I am scared to discuss how I'm feeling or if I'm in a flare with him in fear him thinking I'm over exaggerating or have some mental problem. I'm just so frustrated and don't know what to think or do. I know there's something going on with me my PCP thinks it lupus for sure but yet my rhuem isn't positive. I want a second opinion but there's no other rhuematologist in my area who takes my insurance. So I figured I turn to you guys for your input and/or advice. Is it common to have normal labs during a flare? Does lupus take time to fully develop before it shows in labs? Has anyone had a similar situation to mine? Do I meet the criteria to be officially diagnosed with Lupus? Thank you all so very much for reading. Much love to you all.
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lupylisa44 responded:
I would suggest you seek a second opinion. Even if you have to drive a ways to find one. Ask your PCP to see if he can find one for you.
With love, with patience and with faith, we'll make our way.
 
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nancyj95 responded:
FIND A NEW RHEUMATOLOGIST FAST!! You need to have one you can count on when you have a flare, one who will work with you to get you through it and one you can call for any reason. I am blessed to have a fantastic one who diagnosed my lupus 16 years ago even though I may have had it much longer than that. When he found out I was in rehab (in hospital rehab) for a total hip replacement, he saw me every single day and never charged me or my insurance company a penny. I call that going above and beyond for a patient. He always returns my calls and is with me all the way. I am lucky that I live in the NYC metro area (on Long Island) where there are lots of rheumies to choose from and I've already selected one in case this one retires. Did your rheumatologist do other testing-like double stranded DNA? You seem to have the symptoms, but need more definitive testing.,some docs even call something like yours a pre-lupus condition. I really think you need to get a second opinion. I wish you lots of luck and this forum is a good place to get answers!
 
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qianaa responded:
I agree with everyone else, get a new rheumatologist, that was the first thing I was going to suggest from your first line. You may need another PCP too, because there shouldn't have been a years time before they sent you to a rheumatologist. Look on some of the websites and find a well noted rheumatologist in your area. I'm not a dr but it seems like lupus to me, and even if it is fibroma you need some help, which they are not providing. Get better doctors to help you and persist that they find out what is wrong with you, or ask your parents for help to get things done.


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