help needed

[kaya12]

Hi

My blood test for lupus came back negative but they are still thinking it may be that is that possible?

I have hair loss low platelets count is 66 unsure if this needs any treatment , joint pain extreme tiredness ,loss of hearing and in past had undiagnosed seizures

Any help would be appreciated

kaya

[Tiras]

Hi

Take it at what it is worth but, I've been told that you can have lupus and it will not show up on test unless it is active (flare up).

I have SLE and I'm not sure if it is the Lupus or the methotrexate but I have hair loss. I have not lost much on top of my head but, I have absolutely no body hair from the neck down. I'm a guy, so I have no hair under my arms, no chest hair, no hair on legs or feet, and yes, I have no pubic hair. I have a lot of American Indian blood so, I didn't have a lot of body hair anyway, now I have none.

I have had a rash on my right foot (I have some photos on my game page) and I have not been able to wear shoes for almost 2 years. And yes I have been barefoot for that long. I'm use to being barefoot know, it feels natural, and now I don't want to wear shoes if I could. (Thus Coco on this site gave me the name "The Barefoot Gardener").

Lupus pretty much effects everyone differently. My systems may not be the same as yours. Hair loss and rashes/blisters are common denominators but, everyone may or may not have these symptoms. It took about 6 years for my Lupus to be diagnosed .

Hope you find answers soon.

Tiras

"The Barefoot Gardener"

[Natura]

My test results were positive...went negative. They say i dont have lupus, but i still have a lot of the symptoms. They call it sero negative when your blood tests are negative, but you still have symptoms. Good luck. If you are low ended, like I was found to be, you may want to talk to a nutritionist to help you with your symptoms instead of medicine. Sorry.l had to put a plug in for that. I have been treating my low end naturally for 2 years, and doing pretty good. Take care.

[Boldonganny]

Yes definitely. I am antibody negative and diagnosis weather confirmed by a skin biopsy.

[Paul_Howard Partner LUPUS UK]

Hi kaya12 ,

Do you know what blood test(s) they did? It is possible for somebody to have lupus without positive blood test results. This is often referred to as seronegative lupus. Depending on which blood test you had done, the chances of having lupus despite a negative result will be different.

Have your doctors said what they want to do next?

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[kaya12 in reply to Paul_Howard]

Thank you I will request a pack unsure what blood tests they were and I'm being seen again in 6 months it's just such a drawn out process !

[Paul_Howard Partner LUPUS UK in reply to kaya12]

Hi kaya12,

You could ask your GP Practice for a print-out of the blood test results so you know what has been done. Are they just seeing you again in 6 months to repeat the tests?

[kaya12]

hi I had the lupus markers tested but these came back negative im being seen in 6 months just to be reviewed as I am every 6 months but then they just repeat tests every two years I just don't feel as though I am getting anywhere

[alice_sportyauthor]

I had a low platelet count first... ITP was diagnosed, my platelet count has been as low as 7 at its lowest. I lived with ITP for nearly 17 years before I collected a Lupus diagnosis as well.