[heavens_child0101]

I have had symptoms of lupus for years (achy and swollen joints, extreme fatigue, skin rashes, anemia, butterfly rash on face, sun/light sensitivity, hair loss) and it is getting progressively worse. I don't have a family doctor because there aren't any available in the city we moved to so I just go to a walk-in clinic. They are really bad at actually listening to patients so I am very stressed about all of this. They finally ordered an ANA test and the results came back. It was positive with a titre of 1:320 (normal is listed as less than 1:40) and a speckled pattern. It says speckled pattern is consistent with lupus, mixed connective tissue disease, scleroderma and Sjorgens Sicca complex. I don't have the proper symptoms for scleroderma or Sjorgens Sicca complex and I am convinced it is lupus (because of all the symptoms and the butterfly rash). I am supposed to go discuss the results with the doctor on Tuesday but I am very stressed about it because I am afraid she is just going to send me away and tell me it's nothing. Do my blood tests results point to lupus? Should I ask for a referral to a rheumotologist? I am in Ontario, Canada so I don't have much say over this and if they refuse to refer me there is nothing I can do. Thanks for any help.

Oh I forgot to put I am a 29 year old, married, mother of three.

 

[lazylegs]

Hi Heavens Child,

Welcome to the site. I am glad you found us and hope we are able to help you find the information you are looking for.

Your symptoms do sound like Lupus. Now that you have a positive ANA I would think the doctor is going to take you more seriously. A referral to a Rheumatologist is definitely in order.

Good luck with your appointment on Tuesday.

Take care,
Lazylegs

 

[Jesse88]

Hi Heavens,

Your ANA results are identical to mine plus you have the butterfly rash, which I don't have, yet I'm dxd with lupus and Sjogren's, though it was over a year before it went from undifferentiated connective tissue disease to that. I'm betting it's lupus (though I'm no expert) and really think you should push to see a rheumatologist. It's important you get on the proper medication. Your bloodwork certainly warrants further inquiry. Good luck and let us know how you make out.

 

[Maia]

That is definitely a high enough ANA titre to deserve to be taken seriously and referred onto a rheumatologist. If they don't, then I hope there is some sort of appeal process you can do!

For your appt on Tuesday, it would be important to bring along any additional supporting evidence like a list of present/past symptoms and any pictures of any rashes you have had in the past, or other blood test results which could be consistent with lupus (like anemia or low WBC/neutrophil results). Especially if you do not get to see the same doctor you saw before who ordered the ANA test.

I think the appointment should go well for you though; and hopefully there is no need to be worried about not being referred on.

 

[heavens_child0101]

I went to the doctor yesterday and she took one look at the ANA and said she was going to refer me to a rheumatologist. Yay! I don't know how long it will take to get in, I am just supposed to wait for them to call me with the appt date. I am in Ontario, Canada and there can be long wait times. I just hope it's not next summer or something crazy like that!

I am still feel horrible all the time. I am achy and and uncomfortable and tired and just blah!

 

[Tallulah]

Hi HC, I am in Ontario also and have seen a couple of rheumys. I think the longest I waited was 5 months but it all depends on what area you are in. I have had a positive ana 1:160(different patterns) for over 5 years now and many symptoms but still have no diagnosis. The only other positive blood work I have is a low WBC and anemia. My Dr. has called what I have grumbling disease or perhaps an overlap, ( to what I don't know). You may be lucky and have other blood work that can help with diagnosis. Hopefully they will give you something to help with your symptoms. Let us know how you make out.

Hugs, Tallulah

 

[heavens_child0101]

Talullah -Yes, I am hoping that if I DO have lupus that there will be other bloodwork to back up the diagnosis or I might have difficulty getting diagnosed. I've got some pictures of rashes I get to take with me and I am going to make up a list of all the symptoms I have, when they first occurred, etc. Do you know why they aren't willing to diagnose you?

I am in the Kitchener/Waterloo area by the way.

 

[Tallulah]

Hi, I guess it's because I don't have enough symptoms or because my ANA has never been higher. I really don't know, one rheumy said she didn't know what was wrong with me, the next one told me I had fibro. Then a friend of mine with lupus asked the same rheumy if she might have fibro also as she was achy. The rheumy said, " you don't have fibro, that's a wastebasket diagnosis". So... I asked my G.P why did this rheumy tell me that's what I have if he doesn't believe in it. My G.P said, " that's what they tell you when they don't know what is wrong with you".

So, here I sit feeling unwell and hurting but with no diagnosis. I pray every day that what I have will go away and I try to ignore it and get on with my life. My hands are starting to curl in and we thought for awhile that I might have scleroderma but my G.P says no, that starts at the tips of the fingers, not pulling in on the palms. Sorry, I don't mean to sound so negative. Sometimes it takes awhile for all the pieces to be put together and sometimes they never are.
I know I should be thankful that I haven't had more severe disease.

Make sure you tell the Dr. all your symptoms, even if they don't seem important. He will probably order more blood work. Good luck!

I am in the Mississauga area. Take care and keep warm. It's been too cold lately eh? Hope it's not a sign of what's to come this winter.

Hugs, Tallulah