I had a followup appointment this morning with my GP over the abnormally low CBC counts I've had (when I was feeling really terrible during what I would normally consider a bad "fibro flare"). I went in bound and determined to get some answers, or at the very least, get her to take me more seriously.. Yeeeeeh, I don't think that happened..
She did finally agree to send me to a hematologist (she seriously wasn't going to like she said she would at my last appt, but I kept pushing it), but saw no point in sending me to a rheumatologist until AFTER I see the hematologist and then go back to see her.. I asked her about ordering another ANA test for me to have done with the next CBC and that I wanted to be able to have it done on a day that I felt terrible like I did before.. I'm still not convinced that I don't have it.
Well, she said she saw no point in it. She said that IF I had lupus, the ANA would be positive and that the positive ANA is hereditary.. you don't always have lupus if it's positive, but if you DID have lupus, it would only go up and down during flares.. it will never go from negative to positive and never go from positive to negative. That's not true is it?? I mean, I think I remember a few people saying that it took a while for their tests to come back positive.. but it eventually DID turn positive. Anyway, she wouldn't order one. All I have ordered is another CBC. That's it.
She said the same thing about the Rheumatoid Factor as she did the ANA.. that I either carry it or I don't. She said that she has a high RF herself, but shows no sign of disease.. and if I had it, then I would test positive.
Sooooo, where do I go from here?
I feel like we were really starting to get somewhere (other than the dang Fibro diagnosis, which I was fine with btw UNTIL my bloodtests came back abnormal) but I hit another brick wall
Do I bring all of this up to the hematologist? Grrrr, it's going to be another 6 months before I get anywhere else!!!!!!
First thing you need to do is find another doctor! ANA can be positive and you can not have lupus (I found out my ANA was positive after having severe knee pain for weeks, then the malar rash), but it is an indication that something isn't right with your immune system. Some people are just positive for no reason. Your ANA can go from positive to negative, something mine has done on a couple of occasions- but remember it may be different if sent to a different lab. Not all laboratories are the same. The RA factor can also be positive without any signs of disease, and in lupus patients can be positive also as a symptom of disease. Mine turned positive about 2 years ago, but so far I have no symptoms of rheumatoid disease- just what they call lupus arthritis.
The road to becoming diagnosed is long and hard, but you are your best advocate. If your doctor won't listen to you- find a different one.
Pambyboo, so it CAN go from positive to negative in someone with lupus? I do understand that normal healthy people can have a positive ANA and have no symptoms whatsoever, but the way she was explaining it was if you have a negative ANA, you will always have a negative ANA. If you had a positive ANA, and you have lupus, the titres would only go up and down during lupus flares, but never go away. Same thing with the RF.
In short, I'm soooo completely confused out of my mind. I don't think she knows what she's talking about AT ALL. I mean, by saying that if your "hereditary" ANA is negative, it will always be negative, and that you can only have lupus if you have a positive ANA, then that would mean that no one with a negative ANA would ever have to deal with lupus, wouldn't it?? It makes no sense to me at all.
I've never had a positive ANA.. BUT, I've also never had an ANA done when I was in a "flare" either. The CBCs that came back abnormal were the first tests I've had done over a span of five years that I've EVER had done mid-flare. I've always been tested on a not-so-bad day. I haven't had a pain-free day in over 5 yrs now. I do agree with the fibro diagnosis, as it accounts for the chronic muscle pain, but it doesn't explain my new issues at all and it certainly doesn't explain the abnormal bloodwork.
Dee, I never had a positive ANA, but nevertheless I was Dx'ed with an intermediate type of lupus that fits "inside" the broader SLE definition. Thus it's called a "subset" of SLE. It's callled SCLE = subacute cutaneous LE.
Within SCLE, maybe as many as 1/3 of people with it have a *negative* ANA. The antibody most associated with SCLE is anti-Ro, which it took a long time for my drs. to find.
The rash I used to get was an annular ( = circular) nonscarring SCLE rash on my arms & torso. (There's a second form of SCLE rash that's called papulosquamous; that one looks somewhat like psoriasis but isn't.)
As for how lousy one can feel with this intermediate subset... pretty crummy! I have had no "major organ" involvement, but still scored a "4" on the "4 of 11" criteria for SLE. Had migraines, bone loss, persistent anemia, fevers, hair breakage, extreme photosensitivity, fatigue, GI problems, urinary problems, neuro-like tingling, elevated sed rate, joint misery, weight loss, etc.
QUESTION: Do you happen to know if ALL the antibody tests were ever run on you, even though you seem to be ANA-negative? Some drs. stop cold when ANA comes back negative; other drs. forge ahead & order the whole battery of lupus-type specialized tests.
ANOTHER QUESTION: Do you get rashes that might help with answers?
For whatever it's worth... I am truly sympathetic. It took me 8+ years, many dr. changes, and looking like the Tatooed Lady from Ringling Bros. Circus.
Best wishes to you, Dee---from Vee (couldn't resist the rhyme)
It can go negative. I've only done it twice in 10 years, and both times I couldn't tell any difference in severity of symptoms. I'm like VeeJ and feel pretty crummy all the time. Although I can tell when I am coming into a flare, as I feel worse. Achy, fatigue, mouth sores. I don't get a malar rash much- only a couple of times and not very bad. My husband usually notices it before I do. I don't get a rash from the sun, just more crappy feeling. I have noticed severe hair loss recently.
My symptoms started when I was 22 (I'm 36 now). I started with mouth sores about a year before I was diagnosed with being hypothyroid. (Interesting that alot of us here are hypothyroid). I then was pretty asymptomatic until pregnancy at 25. I miscarried, then had two intrauterine growth retardation babies (very small for age) and one more miscarriage. All of my anticardiolipin antibodies and tests for lupus at that time were negative. My IUGR babies were attributed to "villitis"- an autoimmune disorder that attacks the placenta, decreasing the blood and nutrient supply to the babies.
One year after my second baby was born, and 5 months after my second miscarriage, I noticed my right knee was hurting bad. It lasted approximately two weeks, and at that time I had the classic malar rash. I am in the health field, and put two and two together and saw my GP. He did an ANA, and that was the first that came back positive. (1:320, homogenous pattern). I was sent to a rheumatologist who blew it off, told me that it meant nothing- my repeat ANA for her was 1:160 in a speckled pattern. So I went until two years ago thinking that it was all in my head. When my hands were so swollen I couldn't make a fist my new GP ran ANA and RA tests, and for the first time my RA was positive. (1:160). My ANA has never been over 1:320 ratio, and my RA never over 1:160. But, my ANA has been negative twice- once in 2000 (when I thought it was all in my head), and most recently in January. (Great timing then- that was at the Mayo Clinic where I went for a second opinion). Remember though, if the blood is sent to different labs, each has different testing methods, and different techs doing the tests that may or may not be experienced. I have 6 of the 11 diagnosing criteria: malar rash, arthritis, mouth ulcers, positive ANA, a blood clot, and neutropenia. My antiphospholipid cardiolipin antibody tests are high as well.
What I can tell you is to keep reading up on your tests. The internet is a great resource to help you decipher the results, as are people here. And most of all, trust your gut. Find a doctor that you like, are comfortable with, can talk to- and most of all, one that listens to you. They don't know everything, and it's up to you to dictate your health care with their help. You may go to twenty different doctors to find one that you like, and that's OK. It's not a matter of searching until you find one that agrees that you have what you think you have, but searching until you two are a team.
Hope that helps. Write anytime!
I spent 4 years with the same Doctors at a County Hospital,Symptoms getting worse all the time,None even suggested Lupus,I had no idea about Lupus till I read the symptoms one day and began to research,and realized I had 6 of the 11 Criteria.and that is without any of the the bloodtests yet.I switched Doctors to a Private Practice who ordered the Lupus Panel on my 2nd visit to him,I get the results on June 2nd.
"CHANGE DOCTORS DEE"
It is obvious that yours has already got her mind set that she will NEVER give you a diagnosis of LUPUS.
Believe it or not,I found my new one in the phon*****,and he listens to me from the moment I met him.
It is hard to start over with new Doctors....But isn't it worth it to you?
Hope "ALL" are having a "GOOD" day,and can find Joy in it Thanks,Heartburnless
Uuuuuuuuuuuuugh, and I JUST switched to this doctor, too. Grrr. I dunno. I think I'll wait on the switch until I see the hematologist next month and see what he says.
I have an order for another CBC, but I'm not sure if I want to do it on a day that I'm not feeling TOO bad, or if I want to get it done during another "flare". If I do it while not in a flare and happens to come back normal, then I have a feeling that the docs will believe that the last two sets that were abnormal were just flukes.. and then we'll be back to square one again.. but, I don't know.
I have no other ideas left,I am very new at this Lupus thing.
But I know from reading here and many other internet stories,Almost ALL had to switch a few times before finding one that would listen to there needs,and take the symptoms serious.
From what I have read so far in my researching,Doctors are tought many different things / Ideas about Lupus.
That is why some will stop all tests at the ANA if it is Negative,and others order many tests the first time.
Some believe that the ANA will switch from Negative to Positive and others do not.
I am still researching Lupus,But it seems that it basically goes down to the DOCTORS OWN HEART,Atleast that is the Jist I am getting from what I am learning from reading
Like I stated earlier,I am very new at this,but I am learning through research on the Net.
I started out by typing in the word LUPUS in my search engine,and away I went.
I also went to the Local Library and got books about Lupus written by Doctors.
I hope you are able to find the answers you are looking for,
Hope "ALL" are having a "GOOD" day,and can find Joy in it Thanks,Heartburnless
I Know were your at I'm new to all this myself and the Dr's are absolutly doing my head in, the one Dr saw me for 5 mins, didnt even examine me and offered me prozac and wanted to send me to see a psyciatrist.... and well I wont repeat exactly what I said to him...
I have seen four different Dr's since I have been having problems in the last 9 months and all of them just have been a waste of time. I have had to do all my own research and push the gp into doing something.
I too had a negative ANA test last December, which I had to push to get them to do in the first place. Because it was negative they did not push it any further... but having read upon it I know now that this is a cheap and pretty usless test. 25% of the population of the world will have a positive ANA test but it does not mean they have LUPUS. The ANA test is only posiitve in 90% of people with LUPUS, so that still leaves 10% of people with the disease geting a negative one... then it gets better... people with LUPUS can have a negative ANA at one time then a positive the next and so on and so on because the levels of ANA can vary in the blood from one time until the next.
There is no specific blood test that can completly diagnose LUPUS, however there are several differnent blood tests that when the results are put togeather with the symptoms of the disease will allow pysicians to diagnose LUPUS. I found out recently by demanding copies of my blood tests for the past 2 years that I have been having abnormal tests the last 2 years and my gp as been saying that they are ok.
The first thing I noticed is that my LYMPOCHTE count is continually low, this is typical in people with LUPUS and Immune deficeny syndrome, becasue the body's immune system is producing antibodies to the red blood cells. Also my white blood and red blood count is within normal limits but only just again people with LUPUS tend to have low red and white full blood counts. I also noticed that my old GP who as now retired did rheumatoid factar, c reactive protein and ESR blood tests on me 2 years ago and I did not know. My rheumatoid factor was positive again 35% of people with LUPUS get a positive RF test as do people with arthritus and sjogrens and other illness. MY ESR was also high again this is raised in people with LUPUS, anemia, inflamatory disesaes, pregnancy and GI disease.
As a result of me finding this out and that my ankle as again swollen up for no reason, I have had this problem for a good 10 years and my gp could not give me any previous explanation for this, I have also had heart palpatations for 9 years which just come and in spasms, all my tests on my heart came back normal 9 years ago. For the last 9 months I have been having dizzy spells headaches, tingling in my hands, arms and face and muscle twitching in my calves and arms and legs, tiredness, forgetfulness, gasey stomach and aches in my elbows and what feels like pulled muscles that seem to move around my body from my chest into my arms then my legs, there one minute and gone the next and the only explanation my gp could give was stress and anxiety???? Guess what according to the NHS on line website here in England LUPUS causes stress and Anxiety.
The fingers on my left hand went a grey sort of colour the other day I thought it was printer ink at first but I could not wash it off, so I went to see my GP who siad I don't know what that is I said I do this is LUPUS!! add it the other symptoms and my previous blood test's and what have you got???
At last I got a referall to see a rheumatologist, I saw him yesterday guess what my fingers had gone back to normal, but he could see my ankle and as agreed to run the more specific and expensive blood tests, which are, complement studies C3 and C4 whica are decreeased if there as been an immune reaction, Anti DNA, up to 80% of lupus suffers get a positive test on this one. ENA tests will show ANTI-ro is more specific for lupus skin disease but if you get an ANTI-RNP combined with an ANTI DNA is almost total proof of the presence of LUPUS in the body, but guess what a negative test does not mean that you don't have it. ANTI-SM if posiitvie is only found in SLE but again a negative test does not mean that you don't have it. MOST PEOPLE WITH LUPUS WILL GET EITHER AN ANTI-SM OR AN ANTI-DNA. Another test the ANTI-Cardiolipin is also positive in 33% of LUPUS patients.
I must advise you that I am not in any way a Dr and this is only what I have read myself during my challenge to find out what on earth is going on with my body.
My advice to you is dont be afraid to challenge your dr if you think his facts are wrong go and see him and take with you any information that you have been able to get your hands make sure that they are from a good source though re from a LUPUS website for example and if he/she come out with you information that you think is wrong for examlpe you cant have LUPUS if you have a negative ANA test push your literature in his or her nose and say oh yes you can according to this. That's what I did, it scares them to death when you show you have more knowledge than they do. Read, read and read get up to date with as much information on the disease as you can then challange what they are saying.. And dont be afraid to change dr's as many times as you want to in order to get a diagnosis that make sense.
Good luck and let me know how you get on, I hope my information helps but like I said I am not a Dr i'm just a sufferer like yourself.
Hi, Dave. Just wanted to say welcome & add a little something about one of the lupus "subsets", which came as a big suprise to me back in 2000. Here goes.
I was negative for ANA, anti-ds-DNA, anti-Sm, and never had a *malar* rash. But for many years I had annular (circular) nonscarring rashes on my upper arms & torso, along with persistent anemia, migraines, fatigue, tingling, GI & urinary problems, weight loss, hair breakage, elevated sed rate, low-grade temp, joint pain, lower back misery, photosensitivity, etc. I'd had bouts of some of these things since age 13, with more things cropping up over time and everything gaining in intensity, too.
In summer of 2000, I was Dx'ed with the SCLE (subacute cutaneous LE) subset of SLE. I was a "4" on the "4 of 11" diagnostic criteria (many people with SCLE score a "4" or more). But negative for antiphospholipid syndrome.
I write this mainly to convey
(1) that SCLE is not necessarily "just skin". Yes, light cases are "mainly skin", but worse cases are "systemic". But the likelihood of kidney & CNS problems in SCLE is thought to be *lower* than in SLE, but the chances are still there (as with heart, lungs, etc.)
(2) ANA in the SCLE subgroup is more often positive than not (maybe 2/3 of the time, or so)---but it CAN be negative also (1/3 of cases, or so). This differs from SLE, where 97% (figures vary slightly) are thought to have positive ANA. The ANA-thing almost drove me to drink: because I was persistenly ANA-negative, none of my suburban doctors believed I had SLE, thus, in their minds, I did not have any kind of lupus at all.
(Disclaimer: Above is just my PATIENT'S understanding of what I learned, when I finally saw a teaching hospital rheumie & a dermatopathologist.)
I don't know how long my anti-Ro was positive, because I don't know whether I tested positive for it prior, but no one told me---or whether I stayed negative for years with milder rashes but only turned positive when the disease symptoms (including rashes) really accelerated.
It's all mind-boggling---all of this lupus stuff. Have you ever had any rashes at all? Notice any signs that you feel worse overall after sun exposure? Just curious. Best wishes! from Vee
Thanks for your comments, in answer to your questions yes for a good 10 years or so now I have found that when I go in the sun the tops of my eyelids go bright red, I have never worried to much about this I just thought it was skin pigments? however since I have been feeling ill this last 9 months I have researched my symptoms and I have seen photos of this with lupus suffers it comes under the Discoid rash (raised red patches) heading, but because I never reported it to my GP they don't belive me. Then a few weeks ago my fingers on my left hand went a grey/black kind of color which I did go to my GP with who had not got a clue what it was? I told her it was a lupus rash and because she could see this, its what got me my referall to see a Rheumatologist.
Previously my problems were what I could feel nothing thast they could see??
I have never been a person who worships the sun I go on a sunshine holiday may be for one week a year previously, until 2004 which is when I split up with my daughters mom, I brought myself a convertible car and started to go to Spain, Mallorca for long weekends with some friends quite regular so hence I got more and more sun exposure. I did notice a couple of time that my eyelids went red but because I was feeling well in general, because I changned my lifestyle I went to the gym 3 or 4 times per week changned my diet to loads of fruit, veg, meat and fish and I lost a stone in weight I felt better than I had done for years, apart from toe odd swelling up of my ankle every now and again I ignored them.
I did have a problem with my back In 2004, when I woke up one morning and I was in pain in the joint at the bottom of my back in the left side, it gradually got worse as the week went on to the point that I was in pain just trying to put the clutch down in my car I went to my GP who said what have you done I said absolulty nothing at all he said you must have done something I said no I have done nothing at all that I can remember. He gave me some pain killers that did nothing I went to see an osteopath for six weeks until it felt better again. I still get pain in it every now and again then disapears again, in fact only on Wednesday I woke up in pain with it but It had gone come yesterday morning.
I think that both my arms are scared from the middle of the top of my arm right down to my hands were they have been exposed to the sun. I did go and see my GP with what looked to me like disc shaped rashes on my arms they were faint but there she Just shook here head and said she thought it was an alergic reaction to something. I suspected lupus then and got her to the ANA which came back negative. I also showed her the back of my tounge which has a line of 6 ulcers on it I noticed them when I was brushing my teeth one day I have no idea how long they have been there they dont hurt me at all so she said just ignore them? that was last December and they are still ther now.
I have never had a great deal of energy people have always said to me for a youg guy you don't half get tired easily, somedays are better thanothers but I just thought it was the way I was I never once thought that there was something wrong with me until now that is. I have lived a pretty normal life I was still going out to night clubs reguarly until last year, I work for my self work long hours, look after my house do my shopping wahs ing ironing, etc have my daughter stay with me 3 times each week went to the gym 3 times a week and went out 2 nights each week I felt great altough often stressed and tired, thats because of the aggrevation with my daughters mom. That was until Feb 2005 when I had a flu like illness sore throat, runny nose, sneezing, headache and then I felt so, so, dizzy then my left arm went tight and numb just like I was having my blood pressure checked this lasted a few hours. My GP said I had the flu and a trapped nerve in my elbow? The flu symptoms lasted a few days then disappeared the dizzyness hung around a few weeks off and on then disappeared.
I went back to being Dave again, back to the gym by this time I had lost nearly two stone I went down to 11 and half stone my target was to get to 12 stone, but after that I could not stop loseing weight I put it down to my busy lifestyle and how healthy I was eating and my exercise regime. My friends were saying I was too thin and one said you look ill? but some weight back on.
Then in July 2005, I had out of the blue what I can only describe as an attack, the dizzyness returned with the headaches, then my left arm went numb again for a few hours and I had a very upset stomach togeahter with the heart palpatations and the gasey stomach. I have had heart palpatations for 10 years my GP checked me out then and all my tests were normal so he said just ignore them which I did they come in spasms for a few days then disappear again for a few months then come back again. I also felt tired.
I saw my GP who said You have an ear inmbalance and a trapped nerve in your elbow this alarmed me I know this could not be right. My Blood Pressure was raised so he sant me for loads of blood tests which came back normal. I then noticed other symptoms my calf muscles and my left tricep muscle kept twitching on their own my forearm muscle were aching just having a shave and my biceps muscles were hurting just putting hair gel on my hair. I felt like something was running down my face but there was nothing their. I became forgetful and confused I locked myself out my house and took two lots of pain killers within an hour of each other because I forgot I had taken the first lot...........this just is not me at all. I knew something was wrong so I started to research my symptoms, I wnet back to my GP and demanded blood tests for B12, and to see a neurologist, I had an MRI brain and spine which was normal he diagnosed me with stress and anxierty the IDOT!!! So because he said all my family and friends belive it and try to make me go out when I feel awful!!!!!!!!!!!!!! beacuse they just dont get it. I notice some days how my legs just vibrate I also get the pins and needles all over my body.
I feel 90 times better now but still have symptoms most days they come and go, I have had to reduce my hours at work, I have had to stop going to the gym which means I have put over a stone and an half on in weight, it takes all my strengh to get to work most days put some days I almost feel like the old me again and I think great lets get the gym but its a false dawn, becasue the next day the symptoms are there again. One days its my elbows aching the next day its my back then my ankle will swell up for a couple of days then the next day its the muscle twitching then the next days its my muscles aching. The whole thing is crazy, I got copies of my blood tests from my GP for the last 2 years and ESR is always high, as is my rhematiod factor positive and my lymph count is always low.
I know I have LUPUS i just have to prove it to the medical world, well I have got my rhumatologist to do the specific tests now the antii DNA, etc, etc, and hopefully I have some news in the next month on what they say but I would not be surprised if they are not 100% conclusive, like you say I think the tests become positive the more the disease progreses, you need the treatment now to stop it progressing not once its got quite far and done damage to your body. Whatever the result I shall keep fighting on until I get a result that makes sense to me.
I held my father as he died last Thursday and his funeral is next week im trying to keep myself from being stressed out so I dont get another attack, wish me look.
Dear Dave, I can identify with so much of what you just wrote. And you mentioned something weird that unnerved me no end: the sensation of something "running down your face".
I had those same things running up & down my arms---and I was pretty sure I was LOSING IT. You hesitate to even mention a sensation so bizarre, for fear of being thought deranged. During my first appt., when I switched to a big-city teaching hospital rheumie, I described it to my new dr. He didn't blink once, said NOT TO WORRY, WILL GO AWAY SOON.
Being anemic can cause "unexplained neuropsychiatric symptoms". Well, that's the exact phrase printed out on my bloodwork during my years of anemia. So---I wonder if the weird sensations might be caused by anemia? Or possibly the increasing build-up of "immune junk" under the topmost skin layer? If I remember, I'll ask my dr. when I see him in July for possible causes. (My creepy-crawlies went away & never returned, after I started Plaquenil.)
Please accept my condolences on the loss of your father. I just lost mine, too, in April, and was with him. It is so profound a loss. My heart goes out.
Hang in there, Dave. I hope you keep posting as time permits. Bye for now, Vee