Lupus panel borderline?

[guiniveve]

I, like many of you, have been having mysterious symptoms. I am very glad to have found this forum to talk about them. I have an appt at the rheumotologist on Tuesday but am very confused.

I had not even considered lupus until my dr ordered the test.

It came back borderline. He called me and told me the results but didn't really go into what it meant. So, I am very confused and wonder if I have lupus.

I started off with pain in my lower back. It was diagnosed as a kidney infection (with Strep) and I was given antibiotics. A week later I having other pains in my abdominal area. I had a CT scan to rule out appendicitis. I still had a fever but they said that the white blood cells were gone from my urine. They thought maybe collitis. I had a colonoscopy done and that was normal.

The fever was still present. One morning I wake up and can barely move my shoulders, they are so swollen and painful. Then, the bones in my legs started to ache and hurt and my hip joints are very painful. This has been going on for three weeks now and I have had a consistant fever throughout.

I went back to the reg doctor. He discovers I have a bladder infection and thinks I may have polymyalgia. He orders all of these tests including the lupus panel. He calls me later to tell me it is borderline. Which I don't know what that means.

I also suffer from headaches and a swollen optical neve (I have already had a MRI for that which was normal).

I just find all of this confusing and find myself getting more and more depressed as I feel worse and worse.
Does anyone know what the results from the lupus panel mean? Could I have lupus?

I am just ready to feel better.

[jude mack]

Hi There

Welcome to the site, there are tons of supportive and friendly people here. I couldn't say whether you have lupus or not, only your doctor can, you certainly have something going on, and I know it's frustrating and depressing, but hang in there and keep looking for answers. It can take a very long time to get a diagnosis for lupus or any connetive tissue disease.

Be sure to make a list of all your symptoms, and any questions you would like answered for when you see the rheumatologist on Tuesday, we often go to an appointment and forget everything we planned to say. I hope your appointment goes well and you get some answers and treatment. Let us know how it goes and keep posting. It's nice to meet you.

Stay Positive
Jude style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif

[Joandublin]

Hi quiniveve style_emoticons/<#EMO_DIR#>/shakehands.gif

Welcome to the site.

I am sorry you are going through so much at the moment but like Jude says it would be impossible for anyone here to say whether or not you had Lupus. It sounds to me like your doctor is doing everything right and its great that you have an appointment tomorrow with a rheumatologist.

Just to emphasise, it is important that you write out your list of symptoms (as many as you can remember) and, if possible, how severe you rate them. It is very likely that your rheumatologist will order more blood tests so I wouldnt expect too much of an 'outcome' at your first appointment. Lupus is known as the great imitator and there are many many auto immune diseases so it can often take a while for a firm diagnosis to be made.

Also ask your doctor what blood tests he actually carried out and get a copy of the results from him. There are a range of blood tests which are used to help diagnose Lupus. Also if your rheumy orders bloods tomorrow, find out which ones he/she has ordered and ask for a copy of the results. Start keeping your own file of all relevant medical information. Check this site for symptoms and diagnostic tests for Lupus.

Also dont wear make-up or nail varnish to your appointment. I dont know if you have skin problems but if you do then it is certainly much better that your consultant can see your skin without make-up. Even if you dont have skin problems it is best not to make ourselves up to 'look better'. Also a lot can be told sometimes by looking at the nails so leaving off the varnish is a good idea.

The very best of luck with your appointment and do let us know how you got on.

Take care
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi, I don't know what your dr. has included in your tests,
but, only he can interpret them to you. He knows why he ordered
which tests, what he expects for an answer, and what it means.
You will have to ask him to explain it to you at your appt, or you will
have to waite. The blood tests will not tell you "yes" or "no" if you
have lupus, they will only give your dr a guide line as in which
direction to go.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[guiniveve]

Sorry for making it sound like I wanted a diagnosis online. I am just really confused on what these tests mean. I am actually excited about seeing the dr for the first time in my life. I am HOPING she will give me something to stop this aching.


From those with experience, is it better to go in with a list of symptoms or a more detailed account. I am just afraid that when I go in to tell my "story," I will sound like a hypochondriac. In my family, we were raised to never go to the DR unless you have an arm cut off. I ended up with a gangrenous gallbladder because of this.

So, I don't really communicate well with drs. Any advice would be appreciated.

It seems as if many of you on here have been dealing with the drs for a long time.

[Joandublin]

Hi Again style_emoticons/<#EMO_DIR#>/flowers.gif

In my experience I think it is better to go in with a list of symptoms and perhaps rank them on a scale of one to ten on how much they 'bother' you or how much pain you are in with them.

If you feel there is something you need to discuss with the doctor, e.g. a symptom that is not easy to just 'list' then write this down with a bit more detail. I try to keep my stuff to one A4 Page. Write your name and date of birth on the page for your hospital file. You can leave a copy with your doctor and ask for it to be put on your files.

Knowing most members first experience with a consultant they rarely get to the end of the list at their doctors appointments so start with the ones that are bothering you the most. style_emoticons/<#EMO_DIR#>/flowers.gif Dont be too hard on yourself!

I do understand when you say you dont communicate well with doctors. That represents about 80% of us Lupies here I reckon style_emoticons/<#EMO_DIR#>/biggrin.gif . It isnt easy getting your point across particularly as you say you have been brought up in a culture where going to the doctor was a no no. Just do your best. Be honest. Ask as many questions as you can and ask them if you can contact the doc or the secretary outside of your appointment in case there are any things you might forget after the appointment.

Best of luck
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[guiniveve]

Thanks for everyone's advice on here. I actually had a really great appt with my doctor. She spent over an hour with me listening to me read off my list and ramble on. She then did a once over on my body feeling every joint and around it. She said she was 99% sure I have fibromyalgia since I was tender in 16 of the 18 "points". It is good to have a name to what is going on and not to feel like I am just crazy. So, now I am trying to research fibro.

[Joandublin]

Hi Guiniveve style_emoticons/<#EMO_DIR#>/flowers.gif

Great news about your rheumy appointment style_emoticons/<#EMO_DIR#>/highfive.gif Always great to get a doctor that listens to you.

I also have fibromyalgia and I believe it is common in about 30% of people with Lupus. I was diagnosed originally with fibromyalgia but shortly afterwards I was also diagnosed with Lupus.

Fibromyalgia can be very painful. Did your rheumy start you on any medications?

Just a small word of caution...keep an eye out for symptoms that might not 'match up' with fibro. Also the fact that your bloods were 'borderline' and you have had a fever for a long time is a bit worrying. Did the rheumy take more bloods and what is the follow up?

I wish you the very best on your journey and hope each day gets better and better for you. If you have any more questions just post here and there is always someone who will come along and help out.

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[guiniveve]

She did order additional tests. Apparently the first dr didn't test for RH factor. She said the test that was borderline was the platelet count. I also have a pilonidal cyst and she seems to think that it might also be contributing to the fever thing.

She started me on muscle relaxers and after we make sure I have no bad side effects from them, she is going to start me on a skin desensitiser. I am still watching my temp and recording symptoms. She told me that if I felt like her diagnosis may have been off that we would talk about at my next appt after I had a chance to do a little research.

So, I guess right now, I am going to just wait and see how it goes.

[Joandublin]

Well Guiniveve....

All I can say is KEEP THAT RHEUMY! style_emoticons/<#EMO_DIR#>/biggrin.gif

She sounds fantastic and I wish you all the best health wise in the future.

Do let us know how you get on.

Take care
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[Boise Kat]

<div class='quotetop'>QUOTE(guiniveve @ Jun 14 2006, 09:05 PM) Quoted post</div><div class='quotemain'>
She did order additional tests. Apparently the first dr didn't test for RH factor. She said the test that was borderline was the platelet count. I also have a pilonidal cyst and she seems to think that it might also be contributing to the fever thing.

She started me on muscle relaxers and after we make sure I have no bad side effects from them, she is going to start me on a skin desensitiser. I am still watching my temp and recording symptoms. She told me that if I felt like her diagnosis may have been off that we would talk about at my next appt after I had a chance to do a little research.

So, I guess right now, I am going to just wait and see how it goes.
[/b][/quote]

Sounds like the beginning of the "right track." Although I do feel compelled to question as to why no steroidal treatment or NSaids(anti-inflamitories)? As the other poster stated Fibromyalgia is fairly common among Lupus patients, and infact can be mistaken instead of Lupus. As previously stated, it is the great immitator, and can have the docs chasing your symptoms as well. I had my appendix taken out, and come to find out, it was perfectly healthy. However, all the signs and symptoms were there for appendicitis...fever, severely elevated WBC, tender abdomen, etc... Not trying to scare you, just educate you. I went undiagnosed for over 20 years, and have had to pay a terrible "price" for it. (Systemic neurological damage) Be aggressive when it comes to your health care, and don't back down for fear of sounding like a hypochondriac. There were several docs in my past that made me feel like one! And, well...they were WRONG... style_emoticons/<#EMO_DIR#>/afraid.gif The best thing you can do is research as much as possible, look at all of your symptoms, and relay them to your Rhuemy. Make sure that your rhuemy does the entire lupus panel just to check. I never once got the "butterfly rash" on my face --EVER. Some docs swear by this rash to make the diagnosis. However, I do get a rash on my lower arm and on the top of my left foot, from time to time, from sun exposure, and my tatoos become "brail-like" when exposed to the sun. This is photosensitivity, and is attributed to my autoimmune problem with Lupus. Just do yourself a favor...read all the stuff you can get your hands on -- Check out this site, and others. It is so helpful for education, and support. I know how confusing, scarey, and frustrating it can be -- really. style_emoticons/<#EMO_DIR#>/hugbetter.gif

Let me know how it all goes...and don't stop advocating for yourself...and don't let a doc make you feel like you are crazy -- remember they work for YOU> not the other way around... style_emoticons/<#EMO_DIR#>/flowers.gif