View Full Version : Confused and boggled of mind

03-16-2011, 10:19 AM
Hello All! New to the forum. I'm confused about my diagnosis. After years of "you have really bad arthritis for your age!", followed by "you have really bad fibromyalgia!" and other weird symptoms, I finally got a diagnosis. It took 13 years, but who's counting. he he. I've asked several times and finally gave up and out of the blue I asked my rhuemy again and he said "you have fibromyalgia, sjogrens syndrome and mild lupus". OK, I finally have a diagnosis. I've checked my labs online and my doc ran ANA, SSA, SSB, and RF in 2008 and all were negative. He hasn't since then, so why did he diagnose me with sjogrens and lupus? Granted I have the symptoms of both, continual high CRP, high sed rate and continue to get sicker, but I'm still confused. Can anyone here explain this to me?

03-16-2011, 10:59 AM
I can't explain it to you but I can tell you that I reflect your situation to a tee. The only time my ANA goes up is during a super sever flare (usually I'm in the hospital for those!). I continue to get sicker, too. Horribly frustrating, isn't it?!! I was even given methotrexate at first, then plaquinil, then told to take neither because suddenly I didn't have ANA numbers. If the disease doesn't make you crazy, the doctors will!!! Now I take high doses of prednisone which is horrible for you but it helps so I take it.

I hope someone else can explain it to you. All I can do is empathize. From what I understand, Lupus is just one difficult animal to catch and the rheums seem to want to err on the side of caution -- almost too much. Keep educating yourself and write down your questions. I hope others can help more!

03-16-2011, 11:21 AM
You have the EXACT same diagnosis and I do (except, I have a few others that have been added to the list ..sad sigh).
It is a diligent and insightful doctor who will look at the symptoms of an auto-immune disease and make the diagnosis when enough criteria are met. For your doctor to make this diagnosis in spite of the negative ANA, SSB, SSA, & RF means that he is enlightened about the disease. These tests do not determine if you do or do not have the disease, they are indicators of damage that may have been done by the disease. Since you have symptoms, but no significant damage, he diagnosed you with Mild Lupus. I, personally, applaud your doctor, especially if he is recommending treatment right away so that your symptoms do not develop into active and/or debilitating Lupus.
There are eleven (11) criteria for Lupus and, of that eleven, there are only four that a person has to display in order to be diagnosed with the disease. Those criteria include lab work AND symptoms. Unfortunately, too many doctors will refuse to make a diagnosis based upon lab work only and completely dismiss or ignore the fact that their patient is displaying symptoms. I know that no one wants to be diagnosed with a chronic disease, but it is so much better to have an early diagnosis and early treatment in order to manage the disease and to achieve some form of normal life.
We are here for you to help you as much as we can!! Again...welcome to our family.

Peace and Blessings

03-16-2011, 12:01 PM
I couldn't have said it better than Susie! You have a WONDERFUL doctor!

Welcome to WHL! We are glad to have you in the family!

03-16-2011, 02:06 PM
Thanks for the prompt responses. I guess I'll be glad I have an enlightened dr. His bedside manner could use a little help, but I'll put up with it for good treatment.

03-16-2011, 08:09 PM
keep asking questions! Keep a pain journal and share it with your doctor. You are partners in this and helping him help you is the way to go . Be as informed as you possibly can and again- ask questions!

03-18-2011, 12:18 PM
Thanks for the prompt responses. I guess I'll be glad I have an enlightened dr. His bedside manner could use a little help, but I'll put up with it for good treatment.Hi Wow,
Welcome to the WHL and it's lovely to have you with us.
Saysusie as given you excellent advice, my rheumo is'nt that great but me being under a great dermatologist for my raynauds besides who first started the lot off, whatever info my rheumo wow give me, i find off my dermo.

Sjogren's diease i also have and it comes with alot of complications to it and can be a nightmare to your system but i am pleased to hear you only have mild Lupus.

All i can say is be persistent with these specialists and dow let them get you down, as depression is the worst factor for the condition and the bloods fluctuate to much with the disease so always bare that in mind for definite answers.

It will be nice getting to know you Terri xxx

03-18-2011, 09:30 PM
Hi Wow,
Welcome to WHL. SaySusie did give you a great explanation. Lots of people can be sero-negative (Neg. bloodwork) but still have the AI diseases. You are very, very lucky to have such a good rheumy who will treat the symptoms, not just go by the lab work.

03-18-2011, 10:10 PM
Hi hope that you enjoy this family of friends here on the WHL site. Take care

03-21-2011, 08:33 AM
Hello Wow,

I hope your ok since you joined the site and not in to much pain. xxx

03-22-2011, 03:26 PM
hi wow welcome whl family look forward to chatting