New patient with some questions

Hi Everyone, my name is Michelle. I am 26 years old and live in Ontario, Canada. My GP is sure I have Lupus but I haven't gotten the final diagnosis from my Rheumatologist yet as I have only seen her once (I seen her again on May 8 after some more tests come back) but I was wondering if any of you would mind telling me how you got your diagnosis? Was it by tests, symptoms, or some other way? I am very curious as I have no one to talk to about what I am going through and my blood work always comes back normal. Some of my symptoms include:

- painful joints (and muscles sometimes)

- stiffness in the morning lasting over an hour

- hair loss

- loss of appetite

- trouble thinking/concentrating

- weakness

- major major major fatigue

- headaches

- rashes (including butterfly rash)

Thanks for any input you can give me! Feel free to inbox me if that makes you feel more comfortable :) Thanks again!


Hiyas Michelle, welcome! I too have had all normal bloodwork, despite increasing pain and exhaustion, along with hair loss, trouble thinking/concentrating, heat in my joints along with the pain, etc. I even had my regular doc scoff that it was anything at all, told me just to rest when I felt I needed it, and didn't even address my major joint pains. Sooo, I referred MYSELF to a rheumy. Soooooo glad I did. Since then my bloodwork has continued to be normal, and I've added the facial rash. The malar rash was the last detail that clicked it into my rheumy declaring it Lupus (which was a little over a month ago now, so it's a recent thing!), which was a big relief. I had suspected Lupus for a long while, but had believed the bloodwork until my symptoms got so bad that I was missing out on life's normal things, not to mention the more energetic parts of life.

So that makes me ANA negative, which supposedly is a very small percentage of us. I have my doubts about that one, since a lot of docs, including rheumies, are reluctant to diagnose it as Lupus without that bloodwork proof. Which means there probably are a LOT of us running out there, simply undiagnosed. But that's just my opinion, hehe.

Do stick around! Read, share, talk... it's a good group, especially when you are new to the idea of having Lupus. ::nodnod::

Most people take over 5 yrs to diagnose.

I was diagnosed from my blood work. I think the doctor's will only diagnose you with Lupus if they see proof through the blood tests.I had all of the symptoms you have. EXCEPT loss of appetite! Wish that had happened!

I had most of your symptoms…not hair loss…only loss of appetite for about 2 mos., and no major rashes. Just one here or there over the years. Ha all the ogres. Diagnosed by FOOT DOC because he heard me say something that must’ve tipped him off. (Symptoms)…he told me to get blood test which included the rheum. Fracture and sed rate. (Which other docs never seem to do) They were high so he suggested me seeing rheummy. 2 sets if blood tests, then conclusive. I had suffered with aches an pains etc…for 9 years before actually being diagnosed. Really sick with fevers, last year…couldn’t walk at times. Fatigued where I couldn’t hold my head up.

After two hospital stays with pericarditis and fluid around the lungs my internist referred me to my rheumatologist. He took a detailed history and extensive blood work and diagnosed me with Lupus.
I took steroids at first and the Plaquenil now every day. I was diagnosed with breast cancer last year and went through a mastectomy and chemo and I am happy to say that I am cancer free. My dr. told me that the chemo would possibly cure me of lupus. I decided to stop my med. but the symptoms returned so I am just on Plaquenil and feeling well!

Becky here, it took 15yrs to get my yes it is lupus, docs like a test to say yes u have it, i had at least seven tell me i was crazy the lasted i was making it happen to get attention. my test have been normal except in 2006 i had ahigh ana high sed rate, and my protein c was not where it should be, and i have low white blood cell count..none sense then except blood cell i was told by my rumy negative in blood work does not mean u do not have it. i have 9 out of 11 symptoms that say hey u got it. the rash on my face says it all.

I was diagnosed by symptoms about 35 years ago because there were not many blood tests for it, but now they go by blood work. Much of mine has been negative, so all of a sudden my current Dr. says I don't have lupus, when I continue to have symptoms that could only be lupus. She only checked those blood tests once 5 years ago and decided then that I don't have it, so never took the tests again. So hello fellow canuck!

Hi Michelle
I was diagnosed with fibromyalgia in 2007,then lupus in 2012. Lupus affected my lung and I went to the hospital for pain. I have severe fatigue, hair loss muscle pain cognitive thinking problems. I have removed wheat from my diet and this has helped with foggy thinking mostly.

I have the same symptoms of you except the loss of appetite I eat everything!! I also have the stiffness in the morning when getting out of bed that last 30 mins to an hour. I just keep going and that seems to loosen the joints. Tiredness is a big thing as well. Seems like I can never get enough sleep. But I think my meds and vitamins are starting to help with that. I have good days when it is sunny and warm. Bad days when it is cloudy and cold. Headaches are the worst for me I get them 2 to 3 times in a month and I'm generally down for the count when those come along.

I was diagnosed a couple of years ago. I was in a lot of pain that not only was my joints hurting my skin hurt really bad. Went to my GP and he ran test. ANA was positive so he sent me to a rheumy. He put me on prednisone for the first 6 months and then pred and plaguenil the next six months. Now I'm totally off prednisone (unless I have a flair then I take 5 mg pred 1x a day for a week) I just take plaquenil and see my rheumy once a year. Good luck and please share or ask questions on here any time. That's why we are all on here.


I am 41 years old and had symptoms of Sojgrens and all symptoms you mentioned relating to Lupus beginning about 5-6 yrs ago. I even had sinus surgery thinking I had sinusitis. I had pleurisy and pericarditis. I was diagnosed with SLE last year. All blood work was positive. I will say when I first did blood work it was mild positive. A year later and with stronger symptoms my test were mid-high positive! I think that you should go get tested when you are in a flare. That is what happened to me, but my physical symptoms are extremely pronounced as well. I now have Raynauds along with the other two. One great thing is I live in So Cal (LA) and my Rhuemy is amazing. His name is Swamy Venuturapalli and he’s partners with the famous Daniel Wallace. Prior to Dr. V I went to a horrible Rhuemy closer to home and what a difference it is to have a amazing MD!! I know I’m in the best care possible, and I’m so lucky to live here. Please so on amazon and look up Dr. Wallace’s many books. He is the guru for all Rheumatic disease, especially Lupus. All celebs go to him. His newest books (forgot the name) is awesome and you will learn so much from it. It does talk about the lack of objective measurements. It will help lead you in the right direction and confirm what you already know, or believe. Also look on the website and there may be ways to find recommended Rhuemys in your area.

Best of luck!!

I was recently diagnosed, right before Christmas. They did blood work and a biopsy on my kidneys, which is where I have it. I had major swelling in my legs, went to my GP I had for seven years was told to stay off salt and sent me home. After a few weeks it got worse, I changed GP and she is the that send me to the Rheumatologist. I lost 40 pounds in water weight in my legs and feet. Unfortunately because I waited so long I now have nerve damage. From what I have been told the blood work you have done at the GP for say a yearly physical will not detect lupus, because they are not looking for it.

Hope this helps.

Hi Michelle welcome to this site. I’m from Manitoba, so hi neighbour!

I had/have everything you listed, however I only had enough things going on at once earlier this year. I was diagnosed by one doctor as having lupus, but because my own doctor did blood work in 2012 that came back ANA negative (I didn’t even know she tested for that at the time) she refused to agree with the other doc. She ran all new blood work and sent it to a rheumatologist who I don’t see until May.

It can be pretty frustrating, but it def sounds like you’re having an immune issue. Hang in there, and if you don’t get diagnosed soon, be a strong advocate for yourself and find a doctor who will help you figure out what’s going on.

Good luck!

Thank you all so much for sharing your stories with me! This has been so helpful to me and I am holding back tears at the relief of hearing so many stories/symptoms that relate to mine. I knew when I found this website that it would be good for me but I had no idea it would be THIS good and helpful! Thank you again!!


Goodness. My rheumy orders blood tests at least once-a-month. Been diagnosed for about 13 years.

The ANA (antinuclear antibodies) test is more than just a positive or negative result. There are subtypes of antibodies that are measured.

This is for everyone. Please see this article in Wiki.

You got to hold on.

Sheila W. said:

I was diagnosed by symptoms about 35 years ago because there were not many blood tests for it, but now they go by blood work. Much of mine has been negative, so all of a sudden my current Dr. says I don't have lupus, when I continue to have symptoms that could only be lupus. She only checked those blood tests once 5 years ago and decided then that I don't have it, so never took the tests again. So hello fellow canuck!

Even though my rheumatologist was pretty sure I had lupus (for years) it wasn’t until I had multi organ serositis and landed in the hospital for ten days that he said all his doubts were gone.

Hi Michelle. I'm new as well. Long story short… my husband was diagnosed in February 2014 but we started becoming concerned in November 2013. He was diagnosed QUICKLY! However, after lots of thought… he's had it for about 8-10 years I think… going back and thinking of his odd rashes, and how his skin reacts to sun, and random swelling. He went through tons of blood tests in January along with X-rays, ct scans, etc. We saw his Rheumatologist 3 times in less than a month as well as the dermatologist, allergist, and his Kidney Doctor (I always forget what they are called). However, his throat was swelling so there was a concern to get it under control quick. I hope you are feeling well.

Take care and keep us updated!


Lupus is a difficult disease to diagnose, however getting to rheumatologist as soon as possible is vital. My advice. is do not wait. The key is to get treatment before the disease gets out of control. Do everything you can to eat healthy, and exercise. Maintain your stress at a minimal or none is even better.
Stay healthy:)