lupus diagnosus

Hi guys. Thank you to everyone who comforted me when I was diagnosed... I was so scared.

After finally being diagnosed, I was put on a medication for lupus. For the first time in my life, discord sores I have had over and over in the same place cleared up. I was starting to feel a lot better

Because of money, once diagnosed I switched to the heathcare thru Cherokee Nation. The er physician prescribed my meds. They took blood and it was too late to get results there, but my Dr. Let me leave with meds.

OK, so I go back in a month to get a refill, different Dr. And he was very rude and said "You don't have lupus. " and refused to renew my meds.

Has anyone ever been tested positive, and a month later negative? Even though I was sad I had lupus. I was relieved to have a diagnosis... Now I'm just confused and my skin is horrible once again

Thanks,

becca

8 Replies

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  • It's very common to get a positive then a neg result. It can always sometimes b if u are in a flare or not. As u were feeling Bette less stressed etc it could of done something maybe. I have had countless neg n pos results as prob a lot of us have had and one time a rheumatologist told me even though pos I did not have the malar rash on face but on other parts of body I could not have lupus. I know u don't want to hear this but sometimes it takes ages sometimes even years to b properly diagnosed you just have to make sure u write everything down have all ur consultation notes with u. Maybe ask for second opinion. It took me to keep going to my dr and demanding the lupus test that takes 3 months to come back loads of times to get a more positive than neg then going back to my second opinion consultant. Also in between getting at least some meds from dr that will help u and keep moaning about ur symptoms as they have to write down all times u mention. Then before I went to c my second opinion consultant I asked to c my dr notes and get copies. Also keep a wellness diary.

    Sorry this sounds a lot and someone on here may b able to help u in a different way but as I said sometimes it's a long road. In the mean time we r here for u and also there is a closed group on Facebook so none of ur friends can c what u put if you need to let off steam. Every one is really nice like on here. Just search for it in search bar and request invite.

    Hope I've helped a little. As lupus is sometimes really hard to diagnose but u are never on ur own xx

  • J.,

    Thank you so much for your response. I believe the meds worked and took me out of the flare after aonth, so that would make since. Now everything is out of control once again... I am going to do the things you suggested. I have been going to Draw for ten years already and they all givee different diagnosis. Adult acne, a rash, not sure, etc etc. All I know if that this rash did not ever respond to antibiotics and as you probably know, a discount sore feels real different than a zit, especially from the inside out.

    I will check out the facebook group. Someone hacked my page so I never use it, but could log on for the group.

    Thank you so much,

    Becca

  • Discoid lol, spell correct

  • They like to give you different diagnosis' for some reason! Really, you just need someone to agree that it's an autoimmune issue and then it all falls under the same umbrella/same meds. Now they all just say different ones each time I visit. Hmm. sounds like fibromialgia, sounds like Lupus, sounds like connective tissue disorder. haha. I don't care as long as I am being treated.

  • Yes I did that also. First one said positive, then it sent back an updated result as negative. So my Dr sent me to a specialty lab and it came back negative again. But she still has me on the lupus meds she started me on. Seems to me if the meds were helping then obviously you do have lupus! You have any other options of places to go? They don't sound very knowledgeable of lupus there.

  • I am going back to the physician that found lupus, see if she will put me back on meds. It sounds like you have a great Dr. I asked to be kept on the meds cause they helped and the other Dr said No because they are too damaging on a person's system. Even though I told him they worked. Thank you for taking the time to write and hang in thwre

  • You hang in there too. The Dr should realize that lupus and all the other immune disorders take a toll on your body untreated too. So the catch is which is worse to treat or not? All meds have possible side effects, but lupus untreated can really tear up your body.

  • Lol. That's exactly what I said to him, and was amazed at the way he was so hostile and looked at me like a liar. My argument is if I wanted drugs, it sure wouldn't be drugs for lupus! I would go for opiates lol. Some Drs amaze me. Unfortunately in the Cherokee Nation healthcare system, you never get the same Dr twice. Meanwhile my face looks like a bloody gravel road πŸ˜‘

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