Just back from Rhumey

Welcome to the forum

Lupus is diagnosed by symptoms too, that is, what the patient reports as being wrong as well as by signs, which is what the doctor notices and tests like Xrays reveal. So the question is, what symptoms are you experiencing ?

As it is, the bloodwork has definite indications of lupus: the SED rate means there is inflammation, an abnormally high ANA is a criterion for a lupus diagnosis and the anti Sm and dsNA out of normal range are dead clinchers for a lupus diagnosis, assuming there are symptoms. The anti histone antibodies are often high in lupus but don't play a major role in diagnosis. You already have four important indicators.
It is curious that a CBC and a urine test haven't already been done but maybe she is checking up on them again as part of her own diagnostic testing.

Treatment depends on needs and shouldn't be delayed waiting for worse to happen. The Plaquenil is a disease modifying medicine helps stops disease spreading it is an invaluable medicine with virtually no serious side effects. If there are signs of kidney disease for example, other meds might be used initially.

I suggest you make a list of all your symptoms - what makes you think something is wrong and took you to the doctor's in the first place. Typically there are joint aches and pains, fatigue, hair loss and quite often skin problems. If you check out the Criteria lists pinned at the top of not yet diagnosed you will see a list of the sorts of complaints people have and in the " alternative criteria" list, features of health history that many people with lupus experience.

Fibromyalgia is suffered by about one third of those with lupus.
It is treated for the most part with antidepressant type drugs that help restore better sleep patterns which are a feature of fibro.
Sometimes it is hard to distinguish between what are fibro symptoms and what are lupus symptoms. The only test for fibro is applying pressure to 18 points on the body. If there is an abnormal pain reaction to 11 or more then a diagnosis might be made supported by the patient's account of symptoms.

When is your follow up appointment ?

I'll leave it to others to talk about what we can do for ourselves to make life better with lupus. Nothing can stop the disease progressing if that is what it is going to do, except timely medication, but there are lots of life stye changes that can make life easier and increase general good health as well as not making things harder to bear.

Lupus does not always progress - I get a bit worried when doctors talk about "waiting to see". Waiting what for I wonder. If it is sure it's lupus it should be treated at once. Perhaps she meant wait to see what the urine and CBC tests reveal

I think you will find the forum very useful so don't hesitate to ask any questions. There is lots of information and support here.

Let us know how you get on

Bye for now
Clare

Certainly sounds like lupus to me!

I know some doctors and depending on the location have to go by certain rules before making a diagnoses. And yes most go by the 4 different criteria. Hope the doctor places you on the 4th criteria soon. I know I had other symptoms I had were all there and they just didn't say a word to me about it being lupus. And I had no idea what lupus was! I got really bad off before they would even give me a diagnoses. I suffered with mine! 5 years of suffering. But at first it was mild but then I got super sick and could not take it anymore!
I started getting combative with the doctors too begging them to give me something to relieve my suffering. The worst part is me being stubborn and not showing any positive labs. But I was waiting for myself to feel better half the time to get labs done so I could drive myself there and back. Never realizing that when I felt horrible the test were probably positive. They did eventually come positive. And they still didn't diagnose me until I got a skin biopsy for the rash I had on my arms. Yep! I'm photosensitive! After that test I was finally diagnosed! Wishing you the best

Thanks for all your replies

All of you are very helpful and I appreciate it so much. This whole thing started 8 years ago when I went to an orthopedic surgeon because my fingers were always hurting and swollen. That is when the first ANA came up high, he sent me to a Rhumey who told me I had Osteo and gave me celebrex which didn't help much. Next dr I saw said I had RA and sent me to a Rhumy who said I had osteo and pretty much patted me on the head and made me feel like a hyperchondriac.. At that point my primary dx me with MCTD because he said something was happening he just didn't know what. He has been running blood work yearly and this last march decided to do the lupus panel then sent me to another Rhumy. I do have to say, this dr was really nice. She didn't make me feel like I was crying wolf like the others did. She actually did a full exam, which the others didn't and asked lots of questions. She also feels my fingers and toes are osteo because they involve only the top joints. But took x-rays. As to photosensitivity, I work third shift and seldom see the sun. So I don't know. She says if I get a rash, swollen joints other than the top ones, pain in my chest or sores in my mouth to contact her immediately and she also said if the CBC comes back low something about a compliment???? Then she will start treatment. I think she really took me seriously and wants me to call in two weeks for the lab results so will go from there. She said it usually takes 10 years from the first high ANA until lupus is actually dx'ed I think half the problem is that I don't know what symptoms are caused from lupus and what could be related to my diabetes, high blood pressure or GERD. But I think I am on the right track now with this dr. Sorry for the long post, I will try to make it shorter in the future lol... Thanks again.