Lupus or Fibromyalgia

[Spriggy]

My regular GP did THREE tests and my ANA was positive and 1:80. I guess this borderline or something ( I don't understand honestly) but because of all my symptoms, he says, " Lupus."

He sends me to a neurologist yesterday who tells me, " you have fibromyalgia."

And last week he sent me to an infectious disease doctor who told me I tested positive for Epstein Barr Virus.

What in the world is going? Every doctor/specialist gives me a different diagnosis.

I also found out I am hypoglycemic. This is getting a bit ridiculous. I'm almost embarrassed.

My poor husband has gone to more dr. appointments in the last month with me than he has in his whole life. He has been VERY supportive of me and this search to narrow it down but the more we try to narrow it down, the broader it gets it seems.

Is there ANY possible way to find out definitively what in the world is really wrong?

[AnM]

Spriggy,

Hey. Wow it must be confusing for u; every doc. is saying something else.

Have ANY of them run tests? not just one or 2, but checking all your levels.

What made the Neuro. say u have Fibro., I would think since he said this, he did the Pressure points test?? right.

Why did your GP send u to a neuro.? n what were the 3 tests that your GP ran?

GP's tend to only run the ANA test, which is only a screening test, n can be borderline pos. sometimes for odifferent reasons.

U prob. should get referred to a Rheumotologist, if your GP is suspecting Lupus, then that is who u should be going to. n go to 1 that Specializes in Lupus/Connective Tissue Diseases- as they all don't.
& they are more up to date, n should look more at the whole picture, n Not just bloods.

Just curious, what are your symptoms?

I've heard Mono. (EBV) can do some different things to your blood. Have u ever had it in the past?

Or also u can go to an Immunologist. Lily, our Immuno. "expert" :) suggests them, as they are good at putting the puzzle pieces together, n are the "detectives".

I hope u get answers soon! Please keep us updated, Don't mean to ask too many q's, but maybe there's something w/in those that can help maybe so we can try n help u.

Take care, n hope u are as best as can be,
Alicia :coffee: :flowers:

[flutterbye]

Sending you hugs because I can imagine how confused and frustrated you must be at the moment. I think the process of diagnosis often goes that way, and I think that often doctors don't actually realise the impact of what they are saying, they just reel it off. I am no expert in any way about the diagnosis process, other than that I have been through it. It seems odd that a neurologist would diagnose fibro rather than a rheumatologist. I am diagnosed with NPSLE, and also Fibro, which my rheumotologist diagnosed after poking me, however as his diagnosis was of mild lupus and severe depression, I am not sure thatI have a great deal of faith in him. I think it is often a case of putting the pieces of the puzzle together, and of finding a doctor/specialist with whom you have confidence and faith. I do know that it is a difficult time, and it is made all the harder because trying to be assertive and demanding when you feel at your worst is really difficult, what I want to say is don't give up, and don't feel fobbed off by what they say, if you don't agree, because the one thing that I do know is that the correct diagnosis and the correct treatment can make all the difference. Oh one other thing, as far as I understand it lupus and fibro often do occur together, when my rheumatologist explain it to me he put the fibro booklet inside the lupus booklet to demonstrate that although seperate conditions fibro often occurred within lupus. Good luck, and take care. xxx

[raggedyann1]

Spriggy,

the answer can be all of the above. On the list of alternate criteria EBV/mono is listed as a lupus criteria. You can find this post at the top of the not yet diagnosed forum. I also think the EBV anti-bodies stay in your system for the rest of your life so you may not have active EBV,

Many of us have fibro and lupus.

FATIGUE is the one of the biggest things we struggle with.

Lupus is known as the disease of 1000 faces because it mimics many diseses and affects us all differently.

AnM is also right that your GP may not have run all the bloods used in diagnosing lupus and a rheumatologist is the best doctor to see as they are far more knowledgeable about lupus and usually fibro as well.

Let us know how things go.

Take care,
Karen

[skardykat]

:wave: Fibro and lupus here.....(wish it stopped there)
My rheumy diagnosed the fibro almost twenty years ago and gave me the best advise about not stopping activities and forcing myself to go on. Of course, there are times you must stop and you learn when. He called it self-limiting and warned me it could be ten years. Well, it was, but it came back. woopee...Anyhow, you are right when you feel like it gets broader and broader because it usually does. You will learn so much on this forum so please keep in touch.