LUpus Patients Understanding and Support
2,605 members576 posts

I feel like giving up!

I feel like giving up!

Hello! I am going through all this crazy testing for lupus because I had a high positive dsdna. I have all the symptoms and had to wait for over a month to see a rheumatologist. Between that time period, I have suffered terribly and I couldn't do anything without swelling of my throat and SOB! I went to ER for that and they gave me 7 prednisone of 20 mg. that worked really well and I could open my chest more to breathe! By the time I saw my rheumatologist all of my symptoms really lowered :( go figure. I had an entire photo diary, symptoms diary, temperature diary and an entire timeline of all my symptoms! He didn't even look at any of them and when he asked me questions, he asked me with answers. For example, he asked "so you don't have any SOB or swelling? And you don't have a rash or joint pain?" I told him that I most definitely did and I was really confused with threw me off completely. He checked rotation of my knees and my ankles and wrists and looked under my fingernails with a light. That was all he did! Not even joking! I told him about my dry mouth and eyes and loss of hair and every symptom that goes along with lupus and he talked over me every single time and wouldn't let me finish till I showed him a pic of my knees that were swollen. He said I had a high dsdna but my ana was negative and so was my RA. My ESR and CR were high too. He said, "I don't know why you are swelling but you don't have any of the sigs like I have for lupus. I'm going to rule out lupus completely. I don't see any swelling or joint problems now." I completely turned pale and my skin started burning! I started crying but I hid it from him. He noticed I think and he left. He came back 10 min later and said, " I think something is wrong with you but I think it's heart disease. I'm going to run a few more blood tests and send you to get an ECG of the heart." I was then really confused because I have always had perfect heat tests and nothing else at all that showed any signs of heart disease or failure. I had no idea where he came to this. That was two days ago. I went to ER today for neck swelling and I couldn't bend my wrist and all of my results were normal again. I don't understand what's going on. Can someone please give me an idea or similar experience?

7 Replies

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry to read you are so distressed and that your consultation with your rheumatologist did not go well.

Not all rheumatologists are expert in lupus; some have never treated a patient with lupus. SLE is called, "A Disease of 1000 Faces" because it can mimic every disease known!

SLE is very hard to diagnose unless a patient has a positiveANA, a malar rash (specific for lupus and confirmed by a biopsy) and lupus nephritis. Most people do not have these symptoms.

Blood tests alone cannot confirm lupus. Blood tests can and do change frequently which is why blood tests need to be regularly repeated. A positive ANA for example: there are perfectly healthy people who have a positive ANA and who are neither ill nor have lupus!

Conversely, there are lupus patients who are "sero-negative", ie they have lupus but the blood tests are "normal" or "unremarkable." It is rare to get an immediate diagnosis and patients may have to wait until the specialist is able to diagnose. The worst thing is to be given a diagnosis which is then found to be incorrect. This affects the trust a patient has in the doctor; and may cause the patient, you a great deal of further distress.

I am not a medical doctor and cannot give you any medical advice. No one can give a diagnosis other than the doctor you are seeing (you can ask for a second opinion). I can say that if your CRP (C-Reactive Protein) is high, this usually denotes an infection. Lupus patients with a high ESR will have a normal CRP. This is one way of showing the inflammation (ESR) is from inflammation and not an infection.

It seems that your doctor is concerned about you in relation to your heart. The doctor is not dismissing you and therefore you need to see a heart consultant.

I do not know why you think you have lupus - did you conclude this from the internet? It is good news if you do not. I can understand if you are feeling frustrated, but please get these heart tests done. I can also understand if you are feeling anxious or scared as this is not something you had anticipated.

Do you have family or friends who can give you support and come with you when you see the doctor?

With good wishes! 


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.


Thank you for your reply! My new tests just came back actually and my ESR is high and my CRP is normal now. I do have an infected tooth. I think I have lupus because I have every single sign and symptom. I never suspected it until my doctor told me that I had it then it was like a lightbulb went off! it described everything that I had going on with me for years! I am 29 years old and it pretty much started at age 13 when I was diagnosed with scoliosis and had a bleeding cyst on ovary, Unexplained fevers and high wbc counts since I was 4. Age 16 was the beginning of tooth decay and hair loss, and toenail loss along with serious anemia, calcium deficiency and vitamin d deficiency. Age 18-19 random serious infections including appendicitis and serious tmj from impacted wisdom teeth, disease spread to my jaw with infection. Also, a serious kidney infection that put me out for a month. Blistering from the sun so bad it looked like bubbles and caused swelling of my face/eyes. Age 23 another serious tooth infection which put me in bed rest for a week and constant ear infections/bacterial infections. Diagnosed by chiropractor with degenerative disk disease and arthritis/forwarding of the head phase 2. A big disk shaped raised red patchy rash on cheek that lasted almost a month. Headaches that last for weeks, now headaches that never go away. Migraines when I wake up with blurry vision. Rash all over my body that comes and goes when I am hot or in the sun. Throwing up for no reason and now extreme weight loss for no reason. I had been diagnosed with chronic gastritis and had an ulcer (endoscopy).  Treated, still losing weight with nausea. Constantly getting swollen lymph nodes always the same some are new right armpit, throat left (groin area now). Extremely dry mouth with random ulcers. Extremely dry eyes just saw an Optimologist prescribed me allergy drops. Swollen and painful joints both sides wrists ankles elbows and knees. Big toes and thumbs. Pain that feels like when you hit cold to a cavity, shooting randomly from one to the other opposing joints. 


I have also been hospitalized for  emergency potassium Iv, I had only 1%. I had a serious reaction to it so they had to stop and give me an oral pill every so often and watched me for 24 hrs. At 25 I also had a partial small bowel obstruction that made me stay in the hospital for 24hrs. And in 2009 I had slush in my gullblader. Also almost all my tests are "unremarkable" even with visual symptoms. Like my wrist, the ER did a X-ray and it showed no broken bones. But I couldn't bend it and it was obviously swollen with pitting edema and extremely painful. I just think the tests being done are the wrong kind of tests. It should have been a ct or mri of my wrist/hand. I also had an obvious tendon sticking out in my ring finger.


As I said, I am not a medical doctor and only a doctor can make any diagnosis. 

There is no doubt about your physical suffering, but I think you need to address the actual problems you are having without assuming this is lupus. As I said, lupus can mimic every disease, but some of your problems are unrelated to lupus such as scoliosis. 

If  you believe you have lupus, then see a lupus specialists, but I recommend strongly that you see a cardiologist on the basis that one of your doctors said that he felt you might have a heart problem.

Please concentrate on getting these heart tests done asap and see a cardiologist.

If you are in the US, contact the Lupus Foundation of America AFTER you get your heart tests done.

Be well!



Echocardiogram states all normal results except a very low HDL on my blood test. Trace mitral regurgitation and trace pulmonary regurgitation.


Just got diagnosed with hashimotos. Doctor isn't going to treat it because my tsh is in the normal range :/ my symptoms have caused me to suffer including losing my apartment because I'm not able to get out of bed and when I am at work I'm so drained I can't even get up. I always feel super heavy. Not to mention my job is all about how my body looks so the hair loss and excess water weight/swelling is causing me to lose my confidence. All of my back teeth are gone, bruises everywhere and I have a red line around my neck that won't go away. It's on my chest too! I also have a lump in my right breast 0.6 x 0.6 x 0.3 solid nodule confirmed on ultrasound. They told me to put a warm compress on it to drain it though it's not a cyst, said a different doctor. I've seen 3. I can't take it anymore! Having all of these symptoms and positive results but not one doctor wants to treat me for anything! I'm in extreme pain every single day and I'm so tired I can't even get up to make breakfast for my son!


I can understand how distressed you are feeling and that not one doctor seems interested enough in listening to what you have to say.

I do not understand - and I am not a medical doctor and even if I was, diagnosis/treatment cannot be done via the internet - yet, IF you have water retention, why are you not prescribed diuretics?

I think you need to see your Primary Care Physician, which we in the UK call our GP (General Practitioner) and have a discussion about how you are feeling and that you need help.

I am sorry but I do not know what else to suggest to you. Hashimotosis another autoimmune condition and I am wondering whether there is a local support group you can contact.

You are welcome to join the LuPUS Message Board - even though you do not have SLE, there are those who also have thyroid problems.

With good wishes,



You may also like...