To be or not to be Lupus..

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Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 2/15/2014 11:51 AM (GMT -6)   
So now my rheumy says my blood is weird (yes that is exactly how she said it lol) and she thinks I may not have lupus that it may be something else and down to the lab I go for more blood tests. I'm being treated at the lupus clinic at the hospital and they can do more elaborate and expensive testing which otherwise wouldn't be available.

I'm not surprised by this latest glitch thankfully, knowing what others have gone through in attempting to get an actual diagnosis where autoimmune disease is concerned. It takes forrrrrreverrrrrrrr!

On the bright side my rheumy assures me that she has not given up so hopefully this latest round of tests will shed some more light on what my body is doing to itself. I told her I'm pretty much used to this, it took 15 years to finally figure out that I'm allergic to cold temperatures and my whole life has been one "weird" blood result after another.

I gotta say though I'm pretty sure it's lupus and as if the universe were chiming in it's agreement, I woke up with the butterfly rash on my face yesterday :P yeeeehaw :P

My rheumy is pretty awesome I have to say, she's young and vibrant and down to earth. I'm just sharing my experiences because I know that others are also stuck on this roller coaster of diagnosis and apathetic doctors who treat us like hypochondriacs. You aren't alone. If your doctor sucks, find a new one. There are good ones out there. If your blood work is weird, don't let it get you down, the mystery will be figured out eventually and if it isn't, focus on getting through one day at a time. I'm going to be grateful that it isn't at the point where I'm really, really, badly ill and obvious. I tell myself I'm not yellow so my liver is doing ok so far. I'm not going to die overnight. No need to panic. That has to be some consolation, right? Especially when I see what others are going through.

The thing with autoimmune disease is that there isn't a cure anyway, it's about management so ok, I'll manage as best I can. No sense getting myself worked up I suppose. I'm still going to tell her I'm pretty sure it's lupus tho and I have enough showing up in the bloodwork to get whatever autoimmune problem it is treatment and under control regardless of if it has an official name or not. They are all treated pretty much the same anyway aren't they? Trial and error with meds like prednisone, plaquinil, methotrex-something etc etc?

Hang in there ;)

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 2/16/2014 1:58 PM (GMT -6)   
Hi Joie. I like your attitude! It's great that you have a rheumy who supports you regardless of what name the autoimmune disease will have.

I spent two years of doc hopping with the diagnosis of somatiform disorder looming over my head (yes it's all in your head) for two years. Only my psychiatrist thought I had a physical disease. He was right.

Try your best to keep that attitude and let us know when you get a diagnosis. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Sjogren's Moderator

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 2/18/2014 6:13 AM (GMT -6)   
Thanks Butterflake! I was making myself sicker with the stress of it all and thought why am I doing this to myself?! It's unfortunate that some of us have to go through so many doctors before one finally acknowledges that there is indeed something going on. But one will, eventually ;)
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