[Lily80]

Hello all,

While I don't officially have Lupus, it has been suggested by my current rheumatologist. I'm 28 and have been very ill since I was 23. I was had some fatigue issues and a few symptoms before then, but it was about 5 years ago, that I realized something is definitely wrong. (I've had about ever test imaginable and have tried a lot of different medications over the years. I've seen about 20 doctors and have spent around $25,000 and that's with health insurance. So, I'm definitely not new to being sick, just new to learning the "ins and outs" of lupus.)

My ANA has always been negative (4 times). My rheumatologist says he's seen several people whose ANA doesn't become positive till years after symptoms have started. But, I've yet to come across a person like that with Lupus. Does anyone have experience with their ANA being initially negative and then later positive? I realize there are a lot of tests that can point to lupus, but the way I understand it is that typically none of those will be explored until the ANA is positive. Also, my U1-RNP, anti-DNA, the anti-sm antibodies are negative.

My main symptoms:

Extreme Fatigue (5 years)
Hair Loss (3 years)
Constantly red face (2 years)
Joint Pain (1 year) (right hip, and all fingers and toes, middle finger joints swollen since last year)
Extremely pale
Weird rashes
Extremely sun sensitive (1 year)

-Anyways, I'll stop there, but would love an insight. I'm just frustrated (Couldn't you tell and need any good info.

 

[sam101360]

Hi:

I am a serum negative Lupus sufferer. I was initially diagnosed via a skin biopsy.

I have had occasional low C3 & C4, and one positive ANA. I always have high anti-cardiolipins (thus the APS) high CPK's occasional high ESR. Otherwise everything else is just soooo normal.

A good Rheumy will treat regardless, I meet 9 of the 11 criteria and just tested positive for RA for the very fisrt time yesterday.

I was actually re-calssified with Rupus...lol not that it matters...as long as they treatme they call it what they want!

Hope this helps.

Stephanie

 

[KarolH]

Hi Lily and welcome to a great place.

My ANA was negative for the longest time even though I was damn near crippled. In May of this year I was ANA positive and just recently I was ANA negative again. Just goes to show it can wax and wane and take YEARS before it shows up on blood work.

Although it is not common there are some people dx with Lupus who are sero negative. Doctors have to look at the whole picture, not just the blood.

Of the 3 antibodies you mentioned I only tested positive for RNP....the other 2 were negative for me also. I had a lot of blood work done in May and a lot of things came back negative. Recently I had positives on things that were negative just 5 months ago so I think it is possible for things to take there good ol' time showing up in our blood tests.

It is frustrating sometimes when you know your sick and yet a clear picture just cant be painted. I think in due time it will show up. Of the 11 criteria for Lupus how many do you have?

I hope they can figure out what is going on with you so that you can get on the proper medicine and get to feeling better. Keep us posted. Maybe a second opinion would be a good idea.

Nice to meet you and if you'd like come join us in the chat room.:wink2:

 

[Clare.T]

Welcome to the forum Lily

I'm sorry you are so unwell and getting no answers.

It is very unusual indeed to get a lupus diagnosis if there is no abnormal blood work at all, not in full blood count liver function and so on. The only other two specifics for lupus are biopsy proven skin and kidney issues So many lupus symptoms can be caused by a wide variety of other diseases. The anti- Ro antibodies are the most alternative when there is no ANA and they should have been tested for if lupus is suspected.

There are several other more special tests and since the three additional autantibody tests were done it's strange that the others were not.
One is "complement", a sort of protein that is often low in lupus and a few rare complement deficiency conditions that can lupus like symptoms

The others are to do with possible clotting disorders. They are lupus anticoagulant, anticardiolipins and a false positive VDRL syphilis test. Other clotting disorders exist that can also be associated with lupus like symptoms or lupus itself.

You can find a list of blood tests on the information section of this site.

The obvious way to go at this stage would be a dermatologist. Take photos of your weird skin disorders. A skin biopsy stands a good chance of showing up lupus, not 100% but there are several people here who have been diagnosed this way.
Other more everyday problems should be investigated such as thyroid.

I suppose that imaging has been done on the affected joints. Lupus joint pain is usually bilateral.

Meanwhile your doctor could advise with symptom treatment, pain control and might want to try some prednisone to see if that helps you lead your life while all this is going on. Or sometimes when lupus looks a distinct possibility an antimalarial like Plaquenil is tried to see if that helps at all, although it will take several months to work.
Less obvious ways of tackling lupus or chronic ill heath are modifications to life style including dietary changes life simplification, prioritising and eliminating whatever is unnecessary and learning relaxation and de stressing techniques.

Very good luck

 

[Katharine]

Hello Lily and welcome

We met in chat yesterday so I just wanted to say an official "hi"

As I mentioned to you yesterday I am ANA negative and was diagnosed with a positive skin biopsy.

good luck and keep us posted,

Katharine

 

[LolaLola]

Dear Lily, I was negative for about 20 years, despite being really ill. A good Doc. will treat you anyway if needed. Mine did.
x Lola

 

[MichelleAnn]

Hello Lilly and Welcome!!!
Ive never been ANA negative but mine when I started with symptoms was only 1:160. Every year after mine doubled until it hit 1:2560. Its stayed at 1:2560 since. When my ANA was only 1:160 the doctors would not diagnose me with any connective tissue disease because many women have a low positive for no reason. It took me several years until other bloodwork came back positive and I was finally diagnosed with Lupus. The waiting years were the hardest, not knowing, feeling crazy knowing something was wrong with me and not one doctor would diagnose me. I saw many doctors and different departments of doctors. They acted like I was crazy and a hypochrondiac. My neurologist is the one doctor who believed in me and told me to hang in there, all things will come together some day and it did. Patience for a diagnosis? who wants to have Lupus? We just know something is not right with our bodies and we have the right to search and find out why? Although I was told many diseases do not have a name so I may of never had a diagnosis. They always treated the symptoms though and told me to be patient. I wish you luck in your search for answers, whether Lupus or something else. Take care Lily!

 

[Gerri54]

Hi Lilly and Welcome,

I have not been diagnosed with Lupus yet.

Out of the Criteria of 11 symptoms, I have 10. Last ANA test over 3 years ago came back negative.

My ESR last test was at 58, never within normal range.

I have ongoing Kidney/bladder infections.

I have Sjorgrens kissing cousin to Lupus.

My RA tested negative last test.

My liver Enzymes are off the wall.

Until my ANA comes back positive my family doctor will not diagnose me with Lupus, and he will not send me to a dermitologist.


My main symptoms:

Extreme Fatigue (5 years)
Hair Loss (5 years)
Constantly red face (3 years)
Joint Pain (6 year) (right hip, and all fingers and toes, middle finger joints swollen, eyes since 5 years)
Extremely pale
Weird rashes for many years
Extremely sun sensitive (10 years)
neurological disorders
depression, anxiety
asthma

my list goes on.


Hugs

Gerri

 

[Maia]

I really feel for all of you who are so sick but can't get a diagnosis/treatment for often times years! You are not alone in this unfortunately.

To clarify a point already made... doctors *can* override the default lab order to not test additional autoantibodies when the ANA test comes back normal. In particular, the antibody to test for when an ANA test comes back negative is SSA because SSA appears to often "cause" the ANA to be negative or very low in a certain subset of people for reasons unknown.

About 2-5% of lupus patients are ANA negative, and usually diagnosed through skin biopsy or from a very experienced physician which it sounds like you have. In your shoes, I would probably want to try something at this point. A brief course of prednisone to see if it improves symptoms, and if it does move on to Plaquenil.

Many doctors will choose to not diagnose lupus due to it's effect on the chance of getting life insurance and health insurance in the open market (if you're in USA in particular). But a diagnosis of UCTD could be given and treatment could be started.

Good luck to you - I hope you manage to get some real help soon if not an official diagnosis.

 

[nolupusdiagnosisyet]

I have the opposite problem. I have no lupus symptoms whatsoever, but was given the ANA test for some reason by an Orthopedic doctor (he said he wanted to know if my back pain was genetic: I now understand this makes no sense and I shouldn't have been given the test). I failed the test and was referred to an Rheumatologist. The Rheumy gave me the ANA test again, along with the Anti-sm test. I failed both. While I have not been diagnosed with Lupus (because I have no other symptoms other than failed blood tests), I have now been turned down completely for life insurance and am wondering when I will begin developing these Lupus symptoms and receive the diagnosis. This is frustrating. Anyone else failed these blood tests but not been diagnosed?

Thanks!
DAF

 

[Katharine]

Hello DAF and welcome

I'm a little confused by your problem. I presume that when you say that you failed the ANA and anti-sm tests, you actually mean that they came back positive?

For ANA, it can come back positive for some people (usually at a low titer) without them ever having lupus. There can be various causes including viruses and in children of a person with ANA antibodies. I have no idea if the same is true for anti-sm.

I didn't know that one could be refused insurance simply on the grounds of a positive blood test as a diagnosis is made up of so much more than that.

Obviously, if that is the case, it is quite a problem for you and very irritating.

I'm not sure you'll find anyone else here in the same boat as most people come here because they suspect lupus or already have it.

It might be an idea to introduce yourself separately in the "introduce yourself" forum and to post your specific question with a title such as "positive ANA, positive anti-sm - no symptoms?" which would get people's attention.

Your question here, on someone else's thread is more likely to get lost.

bye for now,
Katharine

 

[onetay]

Lily,
I was dx with sle 17 years ago with a biospy. The results were so positive, my dermy had never had one that conclusive before. I have not had a positive ana test yet. My rhuemy now says that the dermy I had did the right thing to help me but had I been in his care he would of waited for the labs to come back positive. My dermy did everything right. So I guess I am still waiting for the labs to come back positive. In the mean time they are watching everything else as there are ups and downs with other things in my labs. It depends on your rhuemy and the symptoms and the labs, and other tests that can be done like biospies. Give your doctor time to do what they have to in order to find answers for you and make sure that you keep a journal of symptoms as this will help with your doctor visits and help them to put everything together for you. I hope you feel better soon.