waiting for answers | Lupus Forums at The Lupus Site
  1. As you can see we have transferred to new forum software which is much more stable and will eliminate problems that we had with the old software.
    *** To login you will all need to reset your passwords. To do this simply click login (top right) then click the forgot password link. You will receive an email with a link to reset your password. You can then use the forums as normal.
    Dismiss Notice

waiting for answers

Discussion in 'Introduce yourself' started by SuperiorGirl75, Aug 13, 2018.

  1. SuperiorGirl75

    SuperiorGirl75 New Member

    Hi Everyone,

    I'm new to this site but have been waiting for answers as to what's going on with me for a while now. Let me back-track my story a little bit to catch everyone up to speed.

    Back in late 2016, I noticed a rash on my right breast which I assumed was from the dry, cold air of Northern Ontario winters. I tried everything on it--hydrocortisone, penaten, aveeno and some cream my mom got for her eczema from her dermatologist--but no matter what I did it didn't go away.

    Late spring of 2017 I made an appointment with my GP and showed him the rash. He thought maybe it was a fungal infection (ick!) so he gave me some cream and told me if it went away we were laughing, but if not, to come back because it could be something more serious like Paget's of the breast (personally, I sort of wish he would have waited before dropping that little tidbit of info on me). So, I used the cream and waited to see what happened. By October it still hadn't gone away, so I went back to my GP, he prescribed me a new cream (which didn't work either) and referred me to a dermatologist.

    In April 2018, I finally got to see the dermatologist. I was feeling confident he would be able to look at the rash and tell me right away what was happening (he's highly recommended and is very good at what he does). Unfortunately it didn't turn out the way I had hoped as he didn't know what it was. He took pictures, scrapings and did a biopsy (thankfully it wasn't cancer) and told me to come back in 6 weeks. He also ordered a large number of blood tests. Most of the blood tests came back okay (cholesterol, sugars, total blood count etc.) but there were some surprising results that came back as well--low B12, negative ANA, postive ENA, postive dsDNA, positive RNP and high C3.

    At the end of May I saw the dermatologist again. He walks in and says 'I'm not sure, but you might have lupus, so I'm going to refer you to an internist/rheumatologist to see what they say'. He also injected the rash with some super steroids (which thankfully worked) and told me to come back in 6 months.

    I was doing not bad with everything (some joint pain and fatigue but nothing horrendous) but the Friday before last I had a very important beach date with two very important little boys. Having blue eyes, reddish-brown hair and tons of freckles makes me very wary of the sun–I wear daily moisturizer with SPF 30, sunscreen whenever I’m at the beach (SPF 60), sit under an umbrella, avoid tanktops and always wear a t-shirt over my swimsuit–but I still somehow burned myself (a smallish area around my collarbone and shoulders, but bad enough that it blistered). I’m not new to sunburns but it’s been years since I’ve had a bad one and I had completely forgotten the agony of it.

    As if the sunburn wasn’t bad enough, ever since I’ve gotten it, every single joint and muscle in my body–from the top of my head to the tips of my toes–has been aching constantly. It’s interfering with everything. I feel completely exhausted, it hurts to climb or go down stairs, it hurts to lift my arms for long periods of time (including washing my hair) and sitting at work is awful. Most days, I just want to lay in my bed and cry. Nothing that I do seems to be helping to alleviate the pain–not Advil, not Tylenol and Advil taken together, not warm baths and not sitting still or napping. It’s constant and very uncomfortable.

    Right now I'm just waiting to see the specialist (I have an appointment for mid-September). I try not to research too much about it (for fear of making myself mad), but most of the things that I've read say you can't have lupus with a negative ANA (which is what I have).

    So I was wondering. Has anyone on here been diagnosed with lupus even though they have a negative ANA?
     
  2. x_claire_x

    x_claire_x Moderator

    Hiya and welcome to site...….. there are a few on here that have been diagnosed by skin biopsy via the dermatologist as their bloods were completely normal, which yours are not.

    It is unusual to have negative ANA when your anti dsdna is positive...and positive anti-rnp is usually specific to Mixed Connective Tissue Disease..which is what I have, with a mix of mainly Lupus, schleroderma and polymyositis, hypothyroid. Like you I was very ill after exposure to the sun, particularly once whilst in the Caribbean and my face got a little pink... I was using a sunscreen that was not up to the job !

    I hear your pain and boy do I remember those days.... the pain is unrelenting, and it is so frustrating not to be able to function normally... I also struggled with gear changes in the car and even holding a cup/glass etc...reaching for items in the kitchen, unscrewing lids...the list was endless, until one day I couldn't move my arms /hands into the angle I needed to eat :0(( a very miserable time...however, I am so much better now ...so it is important to get some treatment if they feel it is definitely autoimmune...and I must say your story is so familiar to me .

    I wish you well with moving forward, getting some treatment sorted so that you can move on to a more comfortable place, may be worth asking the specialist's secretary to let you know if an earlier appointment comes up... that is a long time to be in that pain. It is a good idea to start a daily diary noting your pain every day and pain grading it...noting the weather each day.. your activities and what your symptoms are stopping you from doing etc....take photos of anything visible including skin rashes, swollen joints, ulcers, raynauds etc. It is good for the specialist to see how it is for you every day, as often on appointment day we may be having a better day or don't want to say how bad it is etc...and look very well ! Go there with no make up on or nail polish etc...they need the true picture

    Take care, Claire
     

Share This Page