I am so frustrated

So I saw my rheumatologist last Friday (correction, his PA....if I am paying to see a doctor I want to talk to MY doctor). Said that it showed negative for Lupus, you might of had it at one time but not now. Don't understand that one. Then, I have a high ANA titer, high abnormal ASM antibody count (liver) and abnormal kidney function (low). So basically all I got was 'Well you have a high ANA titer but unless you have had liver disease in the past we don't know what to attribute it to.' Thanks! Have a nice day! You are still confused and frustrated and still do not have an answer. How in the heck was I diagnosed all these years and now nothing? I do have fibro, there was no question on that one. And I'm sure something is going on with my liver because I have to take Exedrine Migraine almost every day for the migraines, genius!!!!

I had a brain MRI and cervical spine MRI done. What is happening to me is more than DDD which I have had before. But I don't know if my neuro is actually looking for MS, or signs of MS. I read where sometimes lesions don't show up until a bit later on the brain or spine. I have cognitive and comprehension problems, people tell me sometimes they do not understand what I am saying. I get migraines, nausea, vertigo and dizzy spells at times. My legs feel not my own anymore. I don't know if I should request testing for MS or what. I hate all this.

Sorry you are having such a rough go of it. I am not sure how they thought you could have had lupus before but now don't. That is a new one on me. I have some of the same problems physically - cognitively it takes me a while to process things which makes school quite difficult. It is very frustrating to have to see a PA when you want to see your doc, especially if your doc is very aware of your medical history. I think you can request visits with your doc and state that you do not want to see a PA - although it may be harder to get an appointment.

Lupus has affected me in several ways - many of them very strange. Sometimes weird things will happen to me and they never really do figure it out - they just attribute it to lupus if they can't find a different cause. I think with scheduling an appointment for an MS workup you should talk to your primary doctor and tell them what is going on. If your Rheumatologist is your primary then you definitely need to tell scheduling that you need to see him and only him so you can talk and sort through things.

I wish you well and best of luck - I hope you get some answers.

Hi pyxie I’m sorry to hear your having a hard time but you have to understand the bloods don’t always go in your favour if you’ve had lupus before and took meds then the lupus will go into remission I’ve had sle for 30 years it’s not to high at mo as I’m on meds but the doc said it’s not the lupus that causes the pain or fatigue it’s fybromyalgia or cf s you can also have ms as I do lupus does progress as you know so keep with it if you aren’t happy see another doc don’t worry OK stay strong good luck and let me know how you get on xxxx

You need a new dr!! Lupus doesn’t just “go away.” Yes. Remission is possible, but your not in remission if your ANA is up AND your having symptoms! So frustrating! ! And if your ANA is up then why are they questioning it? That’s one of the symptoms on the list. Your ANA can be negative but if you have all of the other symptoms they can diagnose you. And it sounds like you are having the symptoms.
I wish you the best of luck. If you don’t advocate for you … know one else will.

Hi, my AnA was negative for 12 out of 13 yrs. Just tested positive this year !! I never been in remission since being told by the Mayo clinic I had lupus! The best advice I can give is focus on the positive, I know other have worse things going, try to help other to take you mind to a more happy place… I’m in more pain each and everyday mmysef.

I was first diagnosed a few years ago by one rheumy. Then a little over a year after being on plaquenil, I switched rheumys. I took all my lab work from before. He did not want to see it until after he ran all his own tests. All of his tests came up negative. His first statement to me was that by his labs, he would not diagnose lupus, BUT because of all the lab work I had previously, AND because I've been on plaquenil, he felt I was in remission. He said the plaquenil was doing it's job. I think that PA needs to do more research.

I tested positive for Lupus finally and that was when I was diagnosed the 2nd time with SLE. The first time I was I went on methotrexate and did wonderful on it but moved and was told by a new doctor that I didn't have it. Several years later I spent almost 2 years being very, very sick, gained a huge amount of weight because I was so inactive and finally a rheumy in another city (we moved again) tested me and voila I tested positive. I have been on plaquenil ever since BUT moved back to same city where I was told I didn't have it and now a different doctor told me I don't have it again. Moral of this story and a lot of your stories too is there are a lot of rheumatologists who are quacks! I have had my primary and my pain management doctors tell me that there isn't a good rheumy in the area. Run don't walk to a different doctor. OR demand to see the doctor and not the PA. The drugs you take for lupus WILL give you a false negative. I now travel 210 miles each way to see my internist in a different state for my lupus care. It is worth it. If I have problems I can write him an email and will get an answer the same day. I can also get an appointment and go there as we have a son that lives there where we can stay. And there is always an ER if I get into real trouble. Best of luck. Gentle hugs.

sometimes seeing the PA is better than seeing the dr, because they can spend more time with you.

i went to numerous doctors. it was actually a PA that finally diagnosed me, because she took the time to listen to me fully.

there seems to be a weird overall trend in drs "undiagnosing" people with lupus.

i don't know what that is about, and it angers me on behalf of those like yourself, who probably have lupus but are now left in limbo not knowing how to move forward because you don't have a defined disease, so how do you proceed???

i'd consider getting a second opinion. and ask around for a recommendation for where to get your 2nd opinion .

I was told that once you test positive for lupus-you have it, it just may go into remission and show as a negative later. I think you need to demand to see the doctor or find a new one! Hope you find your answers.

I am so sorry. Its seems rheumatologist are turning away from lupus. I have heard many stories. I believe the people had an still have lupus. The medical field has tightened the,diagnostic criteria for lupus. Many md don’t agree but rheumatism are suppose to be the experts so once again we get thrown out with the bath water. Keep searching. Find a doctor that will listen. Its your health. Be your own hero


I feel really feel like lupus is often over diagnosed as opposed to under diagnosed and that's why a lot of us get conflicting diagnosiss with the same symtoms but fluxuating labs from different rheumatologist. . Im speaking from experience,its happened to me too. . i became very ill very fast a couple of years ago and between my labs,hemo issues and symptoms all my specialist were on the same page that i had severe SLE. . By the end of last year most the cartilage in my large joints was rapidly disappearing but when the top of my left ear began to painfully swell, trun bright red and " reabsorbed " i was firmly diagnosed with a rare disease of the cartilage "relapsing polycondritus " with overlapping lupus /connective tissues disease. .. it is autoimmune too and has some similar symptoms to lupus and is treated by all the same heavy duty meds im on or have been on in the past but it is a completely different entity ! It just need a little time to fully develop . . I do understand how frustrating it is to be ill and not have a straight answer but there are an outrageous amount of autoimmune diseases and disorders that exists and not all of them are treated effectively by the same meds so it really is important to not put all your energy in having a " lupus "diagnosis " but rather proper diagnosis. . I recently read the newest criteria for SLE and seems like the only change is more emphasis on constant hematologic issues , cardiolipin antibodies, heart palpitations /inflammation.. hopefully your not having these issues yet or at all and your dr can figure out an effective treatment of meds and or diet to help soon xo

Your history is too complicated for a PA. I refuse to see one - they are great at handling the basics but Lupus is too complicated. Find a doctor who will see you and not send in an assistant.