my diagnosis unfortunately took 3 years!! they assumed i was crazy for a while... how long did it take you to get diagnosed??
I'm on year 2 and still waiting for the "official" diagnosis. I know I have lupus, everyone around me knows I do (mostly mom and dad since they've dealt with my dad's for 20+ years) , but I'm still waiting for the doctor to say those final words. Hoping to hear them on the 19th, how weird is that to want a doctor to diagnose you like that?? I just want answers and relief.
I began having problems after having a bad bout with the flu 22 years ago. I was tested for MS and diagnosed with fibromyalgia. Back then most doctors believed fibromyalgia was more of a psychological problem. I was told to see a therapist and prescribed an antidepressant. Pain for many years and other problems like vertigo, losing my balance, hearing difficulties, vision problems is what I experienced through the years. In 2008 I began feeling very sick. Had blood work done and it was low positive for lupus. My rheumie says she suspects lupus based on symptoms and bloodwork, but hasn’t said it’s definitely lupus yet.
I had my first symptoms when I was about 14 or so, and I'm 51 now. Although I had some flares between then and now, I was mostly in remission until I was 49. When I started menopause, my symptoms really increased and then it took a year for my diagnosis. I could have been like my mother, and never had a diagnosis.
2 months - but that was because of aggressive searching due to me having another Rare issue called POTS which started at the same time- though I am not sure my records say actuelly lupus- as it doesn't show in labs. she said my symptoms mimic "possible lupus" and im being treated with Plaquinil
Mine took about 2 years. It started at my main doc for a rash. I was given prednisone 2 different times and within a week it would come back. I was then sent to a allergist and found out I am allergic to everything. Thank goodness not severely. Then to a dermatologist who told me I had adult acne. Then to a rhuemy who said that everything looked fine. Then back to the dermatologist who finally believed me. They tried lots of different meds. I finally requested to go to Mayo Clinic. After 2 visits and a biopsy I was given a diagnosis. Tumid Lupus. Most likely only skin involved.
my diagnosis was within 2 weeksafter a major sinus infection.
but lupus did go unnoticed as a child when the symptoms were more than evident.
so we stop pursuing an answer and agreed with the doctor it was growing pains. but now we know that was not true. they kept testing me for arthritis ..... in the 80's lupus in adolesents was not common.
Thanks for all your replies I’m just really interested to know how long it took for others and what you all had to go through to get the diagnosis… I was tested for all sorts because my stomach is being affected in a big way so they thought it might be crohns or colitis or something and also after nothing came up they thought It was all psychosomatic even though every time I went to the doctors or hospital I was complaining of joint pains and fatigue but I was ignored and they thought my rashes were eczema because I suffered it as a kid but apparently I havnt had eczema for years it has actually been lupus… I was even sent for light therapy at one point and the dermatologist diddnt even guess lupus and I got really ill from the exposure to uv and no one could figure out why
the dermaologist did blood work last july.
I was ana positive and biopsyed in feb to have lupus (sle) but i had a couple of symptoms over a year before that. so i'm not really sure
This time I was sick for two years and my rheumy was treating me for fibromyalgia, I just kept getting worse very tired, joint pain and an overall feeling of unwellness. I switched rheumys and to my misfortune they were friends she would not give me a different diagnosis. Finally, I ended up having several lymph node extracted and the doc said that there was a whole body inflammation causing this issue. So she was pushed into a diagnosis of RA. The rash o n my face has been ignored over and over. Ay that time I had a positive ana and very high sed rate. I am still waiting for a diagnosis of lupus Where do I go from here? I am now in remission but what will happen next time.
Hi, it took me about two weeks after seeing my doc... The only reason I think it was found and diagnosed so fast was because my mom has it too and I had the signs, hair falling out, rashes, body aches.. So she immediately sent me to a Rhumy and she took lots of blood and in about two weeks told me that I was positive for skin lupus, I already knew it but was in denial until I had to get checked.. It's amazing that with all my symptoms, the one that got me moving was my hair falling out..
Too many years to count! I was finally diagnosed last year. Looking back, I have had symptoms since, at least, the last 20 years. I've slowly been adding symptoms until it became more obvious that it wasn't depression, anxiety or hypochondria. I still catch myself not telling the rheumy all of my new symptoms from past experiences. In fact, in the weeks between my first visit to a rheumy and the next visit for diagnosis, I went to a new pcp. I told him about waiting for test results that may show I have lupus. He actually laughed and said he doubted I have lupus. He said I was just depressed because my only child had left for college and I wasn't working. My husband, normally very calm, gave him quite the lecture. It was a horrible experience.
Its been 14 yrs…they still go back n forth…from ra to lupus…my quality of life is deteriorating…any suggestions on rhumys…ill see anyone and go anywhere…
If you live in the Nashua NH area Dr Gorman is my rheumy and I like him. I am ANA positive since last July and in Feb I had biopsys on my legs and that come back LUPUS. He said I have SLE I had mouth sores and small bald patches which is much better since He started me on Plaquenil. I have fatigue, sun sensivity, rash on my extremenities. I had some other DNA tests done also. I have just a little pain in my wrists. I'm lucky (so far) but I expect it. People tell me "you're taking this well". There's nothing I can do to get bettter so i'm not going to sit in a corner and cry.
Keep looking for answers.
Officially took 2 years in my mid 50s. Unofficially was having symptoms in my late 20s with a positive ANA and hyperthyroidism (treated with radiation). Continued to have symptoms until late 1999. 2000, also was DXed with autoimmune liver disease first and Sjogren's. It can vary.
You've got to hold on!
Mine took about 8 years total. Many years of testing... I was told more than once I needed to see a psychiatrist. When I was finally diagnosed, I cried. Not over the diagnosis, however, ... I was just so relieved to finally be validated.
I was diagnosed in March, 6 months after giving birth to my little girl. I started getting swollen joints in November. I'm not sure if I was displaying symptoms during pregnancy, because I attributed everything to pregnancy. I was diagnosed fairly quickly though.
this is all so pitiful that we have to suffer for so long and still cant get a diagnosis and in my case any treatment, i dont know about any body else, something needs to be done about this but i dont know what no wonder we are so depressed-i have fibromyalgia and dont even tell anybody, if i cant walk one day or something and somebody ask i just say i hurt my ankle or something and really who cares, why even bother to go into it
While I'm so sorry for everyone who has had to deal with misdiagnosis over the years and people telling us all it's in our heads, I am glad to know I am not alone either. At one visit, my rheumy told me he "strongly suspected lupus". Several visits later he said he didn't remember ever saying that. Oh, how I wanted to ....!!
Anyway, I really appreciate everyone's struggles and experiences because I'm not the only one. Thanks everybody
I’m on year 4 and still waiting…I had a bout with pneumonia in the summer of 2009 and that winter I developed sores on my toes from Raynauds. That is what started the tests etc. but my health has really declined since then. I have been given a CTD diagnosis along with several secondary diagnosis’ because of physical symptoms, but aside from positive Ana, low platelets, low ig and anemia my labs are ok. I see a neurologist, GI Dr, rhuemy, optometrist and immunologist regularly but have no firm diagnosis.