diagnosis

[moss]

has anyone else been given diagnosis of connective tissue tisorder ? sle without bloods been postive. i have this lable and been on med s for ten years plus for sle

[NiksB]

Yep all you have written except my connective tissue disease is Marfan syndrome. Its weird i recken i have had SLE for 25 yrs but its only when you get so many markers do you get the label and ive only been diagnosed for 2yrs and on hydroxy.

I knew i had marfan from a very young age so most wierd things were blamed on that and probably masked what else was going on. I had seen 3 rhemys before seeing the fab Dr wright and then Dr D'Cruz and they had the piece of the puzzle that about 5% of SLE suffers without the positive bloods but with the markers but alot of docs wont go out on a limb and give you diagnoses.I found aload of books on Lupus Uk website and they helped to get my head round questions as they croped up.

I'm here if you want to blog its nice to know you arnt alone and also we are abit more complicted,(as if we need that) eg im going for a colonoscopy because of the marfan not the lupus.

Good luck

[Lorelei in reply to NiksB]

Hi, NiksB!

Thanks for the info about 5% of SLE sufferers having negative blood tests results for lupus. I had positive blood tests for 15 years, but now my blood tests have turned normal (negative for lupus). I feel exactly the same as I have for the past 16 years..which is pretty bad.

For some reason, my rheumatologist felt compelled to write to my disability insurance company, report that my blood tests turned negative but not report anything about all my symptoms being just as awful as ever. As a result, I have lost $40,000 per year in disability benefits. This is a private policy that I have paid premiums for for years and years.

So I am very interested to learn that 5% of the people with lupus have negative bloodwork throughout the course of their disease. It sounds to me like the diagnosis of lupus and whether it is active or in remission should be based on consideration of the patient's symptoms and not on blood test results alone!!

Also, it sounds extremely unfair that my disability income has been taken away when I am still so sick. What in the world made my physician turn on me this way? Is there a financial incentive for a physician who provides information that might save an insurance company from paying $40,000 a year in benefits? !

Anyway, thank you for the information!

Lorelei

[moss]

thanks-what do u mean by markers

[Jamjar]

I have the same or similar diagnosis and I have found it very frustrating sometimes especially when dealing with doctors. You are not alone and it has definitely helped me to know I am not alone with the diagnosis.

[moss]

ten years plus down the line and still no positive bloods but secondary condition plus raynards and chill blains every year

[NiksB]

Hi sorry to hear about your insurance company and i dont know if doc's are encouraged to help the insurance company maybe he didnt think of the ramifications of his infomation. If you did get on with him it might be worth asking if he would write to clarify your situation then he isnt contridicting what he his written to them already.

Sorry in the book i have which is Coping with Lupus by Robert H. Phillips from the US he writes about the 11 criteria or markers which help identify if you are following a Lupus like illness. I dont know if you have any books but i find they are better than the internet particularly if they are recommend reading by the lupus uk website etc they are more likely to be truefull and less negative.

Good talking to you hope you get it sorted out.