[JUNE B]

Hello Everyone, I am still finding this hard to believe, and after picking up a copy of the letter to my GP from my consultant, its in black and white Diagnosis -SLE with probable secondary sjogrens (malar rash, raynauds phenomenon, alopecia,photosensitivity, oral ulcers, hypergammaglobulinaemia, synovitis. Then it go's on to say my auto antibodies were negative . So that's not a postive diagnosis is it ? . There's me sitting there with all these symptoms, and meds trying to convince my self they have got it wrong! What is Hypergammaglobulinaemia ? Does it show by this post i am having a bad day ?:hehe:

 

[Katharine]

Hello June,

You can have a positive diagnosis without auto antibodies. I don't have any and have one (then again I did get a skin biopsy that showed lupus). Anyway, it is possible to have a "clinical" diagnosis of lupus and a "good" lupus doctor is able to give one of those without needing bloods to back it up...no idea if I'm making sense here

I'm sorry you're having a bad day...the thing is (I can't remember from before), are you already on lupus meds? or does this letter talk about starting them? that is truly what is most important.

I'm afraid I have no idea what hyper-whatsit is but a quick google tells me it is something found in various conditions (one of which is lupus). I found this link which might be of some use

http://www.tripdatabase.com/SearchLander.html?s=1&gk=Hypergammaglobulinaemia&itemId=142827

sorry, can't help more
:hug:
Katharine

 

[greenhaggis]

Hi June,

re. auto-antibodies - could it perhaps mean you you no inflammation going on at present!!!

Isnt the hypergammaglobulinaemia to do with IGa, and all the IG somethings which are present in auto-imunne diseases!!

Hope apart from all this you are keeing well!


Recently I had a letter from my 1st dery ( dermy) appointment which stated with other things that I had no diagnoses of lupus yet!! Like you I have a letter confirming diagnoses along with the high anti ds-dna bloods too! It did stress me out, but then nobodies perfect including the specialists!

Love and hugs and hope your evening gets better!

Lesley

 

[JUNE B]

Thanks

Thanks kathrine and Lesley,
lovely to always have you around for some sound advise!

 

[Lily]

Hi June,

my auto antibodies were negative

Because of the Azathioprine no doubt - my wonder drug :lol: You still have SLE etc. it's just that the immunosuppressant has made you go negative on your antibody tests. Symptoms are more important than tests in controlling your disease now, bloods won't always reflect how you are.

love
Lily

 

[JUNE B]

Hi June,

Because of the Azathioprine no doubt - my wonder drug :lol: You still have SLE etc. it's just that the immunosuppressant has made you go negative on your antibody tests. Symptoms are more important than tests in controlling your disease now, bloods won't always reflect how you are.

love
Lily

Hi Lily, Thats very intresting, i didnt know that ! hope your feeling ok love june