Good News ? Bad News ?

[Chapter]

Hi everyone, I went for Rheumi appointment yesterday, and today I don't feel any wiser even though he said he would like to end my confusion. In June 2011, with first Rheumi, I began treatment for what were 'Lupus Like' symptoms and ANA 1:320, no official diagnosis. With traveling since then (I follow my husband and his work) I have seen 2 Rheumi's and 1 Intern. One Rheumi said I did not have arthritis so was not interested in seeing me again. Intern was pumped with the Lupus idea with ANA 1:1280, but changed his mind when next ANA came back very low. Now, the one I have seen 3 times in last 10 months. Without a good positive ANA he was hesitant about Lupus, then when he got his high positive he felt he had missed my nice rash so wasn't convinced. That brings us to yesterday, which I guess was the day he thought he needed to give me something. He said that he agreed with original Doctor, in that I was displaying "Lupus" symptoms, but he was not ready to label me with SLE. He feels that at this point he can only accept 2 out of 11 for diagnosis (ANA and rash) because the rest of blood work has been negative or normal. He is not considering my urine is off with blood 4+ and trace protein, my sore joints, frozen shoulders, painful thigh muscles, headaches, etc. . . , felt that some of my pain may be stress induced, but - Now for surprise - he said he was willing to say I have SCLE. His plan, which I think we have already been doing, is to treat with Plaquenil and watch and wait, and I assured him that was fine with me. As I told my husband, whatever he names it does not change how I feel, so we just continue on.

OK, that is what I say to my husband, but really, I need you guys! What is the difference? From my quick look about - seems that SCLE and SLE are very closely related, how does he differentiate the two? Thank you for listening to my lead up to a very short question. All comments will be appreciated.

[brave]

hey.....im a fence sitter lupie,if you go on my blood work ,there all normal apart from ana and a few other abnormalities.however i display every symptom and i also the less common ones and kept a very precise symptom diary ,with over a decade of very obvious flares and now ....the last 12 months of hell with a permenant flare and a bout os shingles which has knocked my system out and i still display shingles symtoms over six months later .My rheumy works on symptoms not lab work and always a wait and see approach.Its sounds to me like lupus,Do you know....i had a rheumy in auatralia say to me ,that i displayed very obvious lupus symptoms ,he then said even if i did have it he wouldnt label me as it would affect all my insurances etc ,i was sooooo angry with him ,what an idiot ,i dont care for insurances,my health is way more important,any way ,if ten people with lupus had blood work were all very different ,so no two people are the same with this disease,it can be skin related lupus,systemic lupus ,connective tissue disease,and more its still lupus.Its like a headache,is it migraine,tension,cluster type headache?its still a headache,i would follow the treatment ,and be very aware of your own body ,good luck ,brave

[roobarb]

Hi Chapter, I was diagnosed with SCLE by a dermatologist, & SLE soon after by the rheumy. Even though I'd been displaying all the signs of lupus for years, with high pos ANA, joint pain & fatigue to name a few.

The SLE diagnosis was kind of by default really, it was as if the rheumy didn't have confidence to do it on their own. It seems typical of a lot of stories on here, in that the rheumies are waiting to see how our symptoms develop. Although this makes life very difficult for us, because we feel that our pain & suffering is being ignored, I guess it's all they can do without the evidence of more reliable blood tests.

I write this calmly with hindsight, but I remember the days when I used to almost pray for my bloods to show something, so that I could finally get some help. Which is the awful position so many lupies are in pre-diagnsois. None of us want to be sick, but we can feel that something is so wrong with us. Yet the doctors are saying nothing much is showing up in the tests.

It might be helpful to ask your GP for a ref to a lupus specialist. There is a UK list on St Thomas lupus trust site, or you could ask on here if anyone recommends one in your area. A specialist might see more quickly through all the subtleties of the blood tests than a rheumatologist, & you may feel like you were moving forward more quickly then.

On the above sight there is a story of a lady with SCLE, I will check her name & get back to you if you would like to read it. I think it also mentions the particular blood test that is needed for this diagnosis. Possibly Anti Ro, but again I will check.

I hope this helps, very best wishes. X

[Chapter]

Thank you roobarb and brave for your comments. It is encouraging to here from others dealing with same issues, like a validation that you are not imagining the whole thing, "it is real or how would these people know how I feel?".

Thank you roobarb for your offer of suggestions, but it is time for me to fess-up here. I won' t be able to see your splendid docotors because I live in Canada - usually in British Columbia, but presently in small town in Saskatchewan. The Rheumi I am seeing is a 2 hour drive, as far as seeing a Lupus "Specialist", I have not seen any listings for them. There is one Rheumi in Saskatoon, 4 hour drive, that has more Lupus patients but she has a 3 year wait list, unless you are a lot sicker than I want to be.

The reason I am visiting 'Lupus UK' , is because it is very informative. There is a lot more sharing and things to learn on your site than I have found elsewhere.

Thank you, Chapter

[Paul_Howard Partner LUPUS UK in reply to Chapter]

Hi Chapter,

Have you ever been in touch with Lupus Canada? They may be able to let you know if there is a lupus specialist nearer to you and without such long waiting lists. They're website is - lupuscanada.org/

[dgleds in reply to Chapter]

Hi! Chapter..your fellow Canadian here:)....2 very good lady rhumetologists (sp) in North and West Vancouver I believe...Dewar is one of them, and the other is named Day, I think...They tried to get me in to both of them, but didn't want me to wait 3 months or so...I ended up seeing another Doctor in North Van.. Id so love a second opinion, but not sure how to do that with Doctors in BC now....

Ps/ I love this site...My parents are British...and I use to live in the UK..lol

[dgleds in reply to Chapter]

chapter hope you see my new comment, cause I tend to put things in wrong places..waa waa

[Chapter]

Thank you Paul, I have browsed Lupus Canada but do not find the discussion, that goes on with LupusUK, that I really learn from. As far as finding a closer specialist, the Rheumatologist I am seeing is the closest, the one with 3 year waiting list is 4 1/2 hour drive away (no plane). I do appreciate your thoughts though.

Chapter