View Full Version : Why does it take years for diagnosis??

07-10-2009, 11:22 PM
I don't think I have posted since I went to the rheumy. He told me with my symptoms and history he really feels like I am suffering with lupus. This was two weeks ago. So he took blood and did the complete lupus screening. I don't know exactly what that consists of- he explained there wasn't one definitive test for lupus it was like 14 different tests and they have to look at the results holistically. I am going back for the results on Thursday. So- here is my question. Why does it take years for a diagnosis?? Is it because the blood work takes years to be definitive?? Or is it that the symptoms are so varied and mimic other diseases that it takes years for a doctor to finally come to a lupus conclusion?? Or is it a little of both?? I am trying to figure out if when I go on Thursday- it could just be the beginning of my diagnostic journey? Or am I fortunate and blessed that my drs narrowed down my search early?? I guess I am curious if I go in Thursday and he says the blood work does not indicate lupus....does that mean I can throw lupus out the window and look at something else? I hope all this makes sense! :skeptical:

07-11-2009, 01:53 AM
Hey there!!
I know there are lots of people that do have to wait a long time for a diagnosis, however i was diagnosed on my first visit to a rheumatologist, and after 1 set of blood tests.
I ended up in hospital for a blood disorder, where they then referred me to a hematologist, who refered me to the rheumatologist, who looked at the tests already done, did a few more he wanted to, then diagnosed me with lupus on the first visit. This all happened from the hospital to the diagnosis in a month.

Im not sure whether i was 'lucky' to get the diagnosis so quickly, or whether my symptoms and results were just much clearer to diagnose than others.
Anyway, i guess what i am trying to say is, not assume it is going to take a long time for a diagnosis to come your way, because it doesnt happen that way for everybody!!
Good luck for thursday, and i hope you get some answers that you are looking for!!

Angel Oliver
07-11-2009, 08:14 AM
Goodluck for thursday and hope you get your answers.

love Amanda.xxxxxxx

07-11-2009, 12:41 PM
It took months for them to diagnose meand it was killer, Lupus is one the most complicated unexplained illness in my book. Doctors never really know what anything is. They take your symptoms attach it to your blood work and put a name on it. They never really know unleess something significantly stands out. I hope u get answers soon. Good luck


07-11-2009, 02:39 PM
The diagnostic journey is as individual as is this disease. Just hang in there, no matter what you find out on Thursday. I hope you get some answers, regardless.

Keep us posted.


07-12-2009, 01:12 PM
hi lovemytwogirls,

you really answered your own questions...yes, it can be a combination of definitive bloodwork, and symptomatic events that finally lead to a diagnosis. However, you also have to consider that often the blood counts do not indicate a problem if you are not in a flare. Also, sometimes different labs have varying degrees of numbers and will come up with different counts.

Hopefully, your case will be one with a quick diagnosis. On Thursday, you will have this answer, so hang in there. But no, if the blood work comes back negative, this does not mean that you through lupus diagnosis out the window.....because it may just mean that your diagnosis is going to take a little longer.

We are here to help you decifer the drs. appointment and your lab results, so try not to stress about this.

07-12-2009, 01:28 PM
There are many reasons why it can sometimes take years to diagnose Lupus. My diagnosis took a little over a year! Lupus is a very difficult disease to diagnose and, as you've mentioned, it is known as "the great imitator." Many of the symptoms of Lupus includes headaches, fever, swollen joints, and fatigue. Well, these same symptoms are also very common in many other sicknesses. Just as are the more uncommon everyday symptoms, such as chest pains or difficulty breathing, abnormal blood clotting, and anemia.

There is no single laboratory test that exclusively proves a Lupus diagnosis. As has been mentioned, Lupus is also different for each person and there is no one set of symptoms associated with Lupus. The symptoms of Lupus can easily be mistaken for many other diseases and disorders. Also, the symptoms may be transient (come and go) or just general as in weakness or fatigue.

Since diagnosing can not be determined from your lab results alone, they are also used with your medical history, family medical history, and current symptoms. It is also frustrating due to the fact that tests can often come back as negative once, then ran again and proven positive. Symptoms that appear today can go away tomorrow and/or different symptoms can appear. Also, many symptoms develop slowly which is part of the reason for conflicting blood tests results.

Because of the difficulty in Lupus diagnosis, the American Rheumatism Association created a list of 11 criteria to help physicians diagnose
Lupus. A patient must display at least 4 of the 11 criteria to be considered to have Lupus, but it is still not that simple. Many other diseases can conform to these criteria. Therefore, diagnosing Lupus usually includes ruling out other conditions that may mimic Lupus, and this can be a lengthy and time consuming process. Diagnosing Lupus is not an exact science and there is still much to be learned in this field.

I hope that I've answered your question.

Peace and Blessings

07-12-2009, 11:57 PM
I just wanted to pop in a say good luck this week. Keep your head up and hopefully your battle with the diagnosis part of Lupus will be short lived and you can move on to the treatment phase. I am sending you lots of hugs :hug:

07-15-2009, 08:54 PM
Thanks so much to everyone that responded!!! All of the answers really helped me!! Well- tomorrow is the big appointment- I am anxious to hear the results. I would love for my dr. to give me a yes or no- but you guys helped me to see that might not happen- and that's ok!! The support on this forum is amazing!! I will let you guys know what he says tomorrow!! Thanks!:cute:

07-15-2009, 10:56 PM
I will be thinking about you tomorrow. Keep your head up and remember, we are all here for you! Let us know what the good ole doc has to say tomorrow. Sending you lots of hugs :grouphug:

07-16-2009, 07:10 AM
Thinking of you at your appointment today...hope you find the answers you are looking for, Lovemytwogirls...

Keep looking for your wellness.

07-21-2009, 10:07 PM
I was glad to find this post while surfing the net for answers, support, something. I am 3 months postpardum with what the rheumatologist suspected as Lupus (hair loss, anemia, joint pain/stiffness, dizziness, fatique, night sweats, positive ana titre). She did a bunch of tests and I went for my results today. Before going to the appt, I was nervous because "what would a lupus diagnosis mean for me" or "am I crazy if the blood work came back negative." Well, low and behold, her tests came back negative. The hard thing for me was her delivery. She basically said that she can't help me since her blood work tests came back negative. I was crying saying "I guess I'm crazy" yet she didn't even have compassion. I am currently just at a loss as what to do from this point. I suppose you could say hair loss, night sweats, fatique, etc could be pregnancy related but they didn't start until 6 weeks post pardum. We asked if these tests could come back negative and she just really blew us off and said to call family md. (note: i've had night sweats and arthritis issues before becoming pregnant. OB panel is what found my second positive ana). I'm just at a loss right now. Very frustrating.

08-01-2009, 09:14 AM
get a second option and find another rhemy....this one sounds no good....i dont have lupus ( have something silmar ) but have friends that do have lupus and ive read heaps on it , and the thing with blood work is sometimes it shows postive, sometimes it doesnt...it depends what mood your immune system is in that day....having a negitive blood screen for lupus means nothing...they need to look at the clinical picture in conjection with your blood work also! a good rhemy would know this and not just blow you out on one set of blood work....also there are other autoimmune illness other than lupus , but they are all pretty much have the same in course and havoc they cause on your body, so it needs further investigation by a rhemy! sometimes in my flares my blood work is negitive for everything, even for inflammtion markers, but it doesnt mean nothing is happening...on one flare i was convinced i was making it all up in my head - even though all my joints were swollen and they found inflammtion cells in my eyes....my rhemy pulled some liquid out of my knee that showed there was active imflammtion ( to prove to me i wasnt making it all up in my head ) and he went on the explain that sometimes it shows in the the blood, sometimes it doesnt, and around 5 % of lupus patients ( and other autoimmune people) never show positive blood work and this is a well known issue in the land of rhemys, which is why a good one will listen to whats been going on in your body and will not just go by what the blood tests show...some times i know ive had blood work that was all abnormal, and i felt fine, and other times they have seen inflammtion in me but returned blood work that was normal and by the blood work it looked like i shouldnt have had inflammtion, where you could clearly see that i did!

this must have been a big huge blow to you....but dont worry you are not mad, you came across a rhemy who isnt up to speed to these sorts of things, its a well knownn fact someone can have lupus and even be in a flare and return normal blood work so find yourself an another rhemy, get a second option and try not to let this doctors mindset get to you, its her problem not your that she doesnt know the full facts about these sorts of things and you are not crazy, you are really having issues and when you find a doctor that will listen to you....all will be well, doctors are like everything else, some are good, some are bad, and you just came across a thick one i think..

heres a link to some info about blood tests returning normal with people who have autoimmune disorders from arc ( a very well respected authiroty on such things) i hope it helps you settle with this. its about r/a, but does state that some lupus patiients return normal blood tests, although this is rare, it does happen


anyhow ive way over typed, but i read your post and ive been there and i wanted to comfort you....its o.k, it does happen, try not to stress about it ( easlier said then done i know ) and get yourself a doctor that knows the facts...or maybe send your old one this info, there tonnes of info on the net about this, and it sounds like she should brush up on her autoimmune knowledge xxx

love n/b/n

Angel Oliver
08-01-2009, 11:08 AM
Im sending you gentle hugs for the way the doctor treated you,like dismissing you.First id speak to your own doctor about this appointment n how she said she couldnt help you..bad attitude! Tell him you want to see another Rheumi and not her.Try and explain you are knowledgeable about Lupus and what your worries are if you are just left without their help.Please try and rest until you get another appointment.We are all here for you and Narrowboat has given good advice and hope that site helps too.Let us know what you decide.I know others will post,so hang in there.

Love n hugs

P.s Lovemygirls2 goodluck.xxxxxxx

08-08-2009, 06:50 AM
hiya..just seeing how things are for you at the mo....hope you are o.k, and you are in my prayers and thoughts xxxx