[terristephens]

I feel I have had many signs of lupus for probably 10 years. The VA clinic did all the bloodwork about 3 years ago and said that everything was normal. I have seen now and have talked to someone that says the blood work doesn't always come up showing lupus. I am worried now that I have just accepted the fact that the bloodwork said no and I have it and wonder about the damage it may have caused. Here are some of the things I have had. I feel I have the "butterfly" rash. It has been there for years...but it is more of a redness most of the time, with occasional rash. I guess you expect the terrible rash...but the more I read it can be just the redness. I am not out in the sun a lot but for 2 years I tried the tanning bed and each time I broke out into a bad rash especially on my neck and chest area...that i had to use hydrocortisone cream for days and days. it was miserable. So I nixed the tanning bed and try to avoid the sun. I have knee and ankle pain a lot. I was diagnosed with pleurisy twice years ago and when I was told it wasn't harmful really so I never went back about it but know how it feels and know I have had it a few time since then. I have terrible migraines. I have depression at times. Tired, tired, tired. not all the time but at certain times so tired...like something is wrong. I was diagnosed a few months ago with petichia, which that said at the ER was vasculitis and given prednisone ect. My muscles ache a lot, especially my neck. I have the worst case of dry eyes, it drives me crazy. And my hair is thinning..more like breaking to me don't know if thats a sign. But now what is worrying me is where I work I have done several dipsticks because I was curious and my urine always has protein in it and usually leukocytes and I don't have a UTI. And a few times there was blood in my urine also. its just scary. I went to my new doctor today and she is running just basic bloodwork and a urinalysis because I mentioned to her about the protien and stuff. I find out tommorow about what it says then I will discuss all of my other problems. I just assumed I didnt have it because the VA said I didn't when I was going to them. Just venting here...its just kind of scary. Any comments welcome. Terri

 

[LolaLola]

Terri,
My bloods took years to turn positive. I was so bad I needed help long before the bloods showed anything. You need an enlightened Doc. who does not go too much on bloodwork.
Best Wishes,
x Lola

 

[Lily]

Hi Terri and welcome :welcome:

Blood tests can change over time, really you should have the full Lupus panel run again, 3 yrs is a long time in the life of an autoimmune disease if that is what you have.

love
Lil

 

[cath]

Hi Terri,

Welcome to the forum.

I'm sorry you are having these health problems. I agree with Lily that it is time your bloods were checked again.

Looking through your symptoms list you do have a number of things that could well be due to an autoimmune connective tissue disease (lupus being one of these). You also meet 3 of the ARC criteria for SLE - not including any blood abnormalities that might be detected. So yes, you do need to take this further. It is possible to have lupus and not have positive blood tests, but it is fairly unusual. Those who have a negative ANA will often still have other tests that come back abnormal.

Have you seen a rheumatologist? It would be a good idea to be refered to one. They are the ones best able to order the appropriate bloods for lupus and other AI diseases. Also you should probably have a 24 hour urine collection done to quantify how bad your proteinuria is, and if necessary see a nephrologist.

If you do have lupus, it is worth knowing about it as untreated it tends to get worse and will/may eventually cause damage to your organs.

Keep us updated?

All the best,

X C X