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Lupus? seronegative? Help!

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Posted 6/24/2014 1:44 AM (GMT 0)
Hi! I'm 34 and have suffered multiple autoimmune disorders since childhood (JRA, Uviitis, Ulcerative Colitis). The last 2 years my health has completely deteriorated. I suffer severe muscle and joint pain/weakness particularly in the legs. I also frequently have migraines and chest pain (costochondritis) and in the past have had hydronephrosis needing stents put in. I've had the face rash in the past, not currently though. But I am very photo-sensitive. My grandmother suffered from Lupus, but I don't know if its genetic. I am notorious for having clean bloodwork. I feel like I'm dying, but on paper, I look like a totally healthy person.
The fatigue and pain is debilitating. When it all started my ANA was negative. But I've been tested 3 times since with high ANA results. But the ANA is negative again and the rheumatologist won't even make an appt with me because my bloodwork is "clean", despite being referred by my general practitioner. I've been in the ER 3 times in the last month. I used to be so active but I'm literally bed ridden now with no doctors willing to help. In the past it's been dismissed as fibromyalgia but none of the fibro meds worked and in my heart I think that's the wrong diagnosis.
My poor husband and 3 boys are so patient and helpful but I can't help but be depressed that they aren't getting a whole mother/wife. Can anyone offer some suggestions as to what to do next? I can't live like this!
Thank you for at least listening to my complaining!
Posted 6/24/2014 3:05 AM (GMT 0)
Hello. I am so sorry for everything you are going through. Unfortunately, lupus seems to be very challenging for doctors to diagnose. Your history would suggest that you have already been a rheumatology patient (previous auto-immune diagnosis) so I am guessing that returning to that rheumatologist is not an option. I would definitely talk to my primary care physician and insist that he/she refer you to another specialist. You know yourself better than anyone. It often takes several doctors and a lot of running around to get a firm diagnosis. Don't give up!
Posted 6/24/2014 4:25 AM (GMT 0)
Yes, find a new rheumy. Once diagnosed with autoimmune it's aways there. It may go quiet but it is still there.
Posted 6/24/2014 1:39 PM (GMT 0)
My Rheumatologist told me that once you are positive (ANA) that you are always considered positive (I think he mean in the presence of other symptoms), but my doctor does not go strictly by blood work.

I would definitely see a different doctor anyway. Once they have made up their mind like that, they do not always like to change it. You want someone with an open mind, not someone who has already made up their mind without seeing you. As for a referral, often times (especially if you have not even seen the physician yet), the insurance company will let you see a different doctor with the same referral. Just make sure they are still in network.
Posted 6/25/2014 1:36 AM (GMT 0)
Hi and welcome to the lupus forum. So sorry to hear that you're having such a hard time with your current Rheumy. I would suggest that you find another one and get your self seen by them ASAP. Lupus is the disease of 1,000 faces and can be very hard to DX.

I've had lupus for 26 years now but it took my Doctors 13 years before they DX'd me and started to treat my lupus. I have had positive ANA's and negative ones, some Rheumy believe that you can't be seronegative and have lupus and others believe you can. I had a young Doctor that was a fellow in the Rheumatology program and he told my surgeon back in 2005 that it was IMPOSSIBLE for me to have lupus and have a negative ANA. Of course, this went into my medical records and I had a very difficult time with getting Doctors to believe me that I was sick.

I hope that your next Rheumy listens to you and will consider all of your symptoms before giving their official opinion. Just so that you know it's common for patients with lupus to also have fibro with it. I have RA/Fibro/lupus all together. Sometimes it's really hard for me to figure out which issues is causing me so much pain. The only medication that really has worked for me has been steroids, I've been on them 14 years now at high doses. I've NEVER been below 10mgs of pred a day, I only lasted 2 weeks at 10mgs and had to go back up to 15-20mgs daily after that.

Good luck and I hope that they figure out things for you quickly. Keep coming to the forum, vent and ask questions as much as you need. Someone, should have an answer in some way for you. Take care and I pray that your pain lessens.

Hugs,
Barbara
Posted 6/25/2014 3:40 PM (GMT 0)
You guys are awesome! Thank toy for all of the responses. I went back to the general physician and when I gave him my previous ANA results (3 positive tests in the last year in the 300's) he said that was good enough for him considering all of the symptoms as well, and started me on the plaquenil and Lyrica. He also referred me to specialists at Stanford.
I do think I'm battling with fibro and Lupus so it is hard to distinguish which is causing the most trouble but I feel like I'm finally getting somewhere. Pain and exhaustion are the worst symptoms. I just want to get back to some form of functional!
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