Hi Everyone...it's late and I am tired, but I had to post this question to you since all of you have probably gone through this getting diagnosed.
I went to U of M on April 3rd. My experience wasn't the best. Now I have blood test results. I am positive again with the ANA test, NAB titer, CRP, low RBC, HGB, HCT, Creatinine and WBC until they were counted. The NAB titer has increased and it was homogenous. However, when they did the Anti-dsDNA test my number was 2.5 and the range is 0.0 to 7.0. I can't remember while I was looking up some of these tests if the last one is abnormally high or low when you have SLE.
They are recommending that I have the anti-ENA test. I was diagnosed by my rheumatologist as having mild lupus before I went to U of M, but when the NP at U of M saw my last ANA and NAB...she said it was too low to actually count it as having lupus. Now it is higher 1:160.
I have a definite diagnosis of fibromyalgia. However, no diagnosis of Lupus has been made. No follow-up appt was given. I am seeing my rheumy on Tuesday. I am very scared because I don't know if my mild lupus is getting worse or if because the Anti-dsDNA was within normal range that I don't have lupus. I don't want it, but if I have it I want to know so I can start a treatment plan. I feel terrible. I feel so bad that my doctor is going to try to get home health care for me because I live alone. I have fallen several times in the last few months.
My blood pressure has suddenly become very high for me... 170/95 at times. My BP medicine was doubled and it is not helping very much. I am seeing my cardiologist on Monday.
I don't know what to make of the test results. Has anyone experienced anything like this and what were you diagnosed with? I know there are other autoimmune disorders. There are times when my hands are freezing in the last few weeks. I have never experienced that symptom before.
I am looking for answers because I am scared. I hope you can have some words of encouragement. I know you are not doctors and only the doctor can make the diagnosis, but you live this day in and day out. Having fibro is bad enough and is not controlled at this point. I can't take anti-inflammatory drugs. It would be very helpful (a miracle) if I could. Please help...I don't know what to think or feel except scared.
Hi nan:)well I think the most important thing to do right now is to try your best to calm down especially if you have existing high blood pressure and autoimmune diseases. Maybe call your rhuemy or primary dr offices tomorrow morning and let them know your concerns/anzity over your blood work. Don't be shy about feeling distressed over your results because the least they can do is say something comforting enough to get you through to your appointment on Tuesday. It's important to remember sometimes a firm diagnosis doesn't happen quickly or at all will autoimmune diseases and there's so many of them and in different combinations like I have...I think a firm "lupus" diagnosis is very important to have when you're trying for disability because connective tissues disease looks vague on paper but lupus is a "connective tissues disease"...The most important thing is that you are being seen by a physician you trust that can monitor your symptoms and blood work and treat you accordingly . I have severe SLE, systemic relapsing polycondritus and late on set homsistine disease ....all are firmly diagnosed and im receiving aggressive treatment with some homeopathic and dite tweeks for balance but im still sooooooooo unbelievably sick:/ I got sick so fast that no one had much time to debate what was happening or conflicting diagnosis .. I have amazing Dr's but have blown through countless medication combs with not only no improvement but rapid deterioration... in the end my "firm diagnosiss" and the severity of my situation greatly helped being awarded disability at age 34 but im still sick and struggling everyday. I hope you get your answers and guidance/treatment soon!xoxo
Hello Nan! I completely understand you being confused and scared I was the exact same way when I was beginning my journey in getting the correct diagnosis. Try and think positive and remember your not alone so express how you feel that helps a lot. We have a lot more knowledge now about lupus than before. Educating myself as much as I can with my conditions helps me soooo much so I would suggest that. Having somewhat of an idea of what’s going on with your body helps ease your mind. Even though there is no cure there are ways to help us through flareups and different symptoms that pop up. One thing my Rheumy told me is that 99.9% of the time they will not give a diagnoses of lupus if the ANA test is negative. Also they won’t diagnose you with blood tests alone but you definitely have positive blood tests and symptoms that are key to you getting the answers you need. Also for me it took a total of 5 years to get diagnosed with lupus, Sjögren’s syndrome, and fibromyalgia. I was initially diagnosed with rheumatoid arthritis which I also have. Sometimes it takes time for more symptoms and conditions to appear along with additional blood tests. In your case it seems like they took a lot of the key tests already since they suspect lupus. One other thing Nan my daughter just got diagnosed with Raynauds disease which can also be secondary to lupus or a primary disease. Some of the symptoms of Raynaulds is cold hands and feet so it may be something for you to also look into. I understand you wanting to have a confirmed diagnoses so you can move onto treatment plans and have confirmation of what’s going on with your body. Try and rest as much as you possibly can and try not to commit yourself to doing things for others right now while your not feeling well. It’s ok to ask for help and believe me I had to teach myself to do that I like to be independent and get stuff done myself lol! Your doing all the right things and I will be praying for you! Keep us posted and take care!
I know it’s extremely frustrating getting to a diagnosis. It’s great that you have such caring doctors. Hopefully you will having some answers soon and will begin to feel better. I will keep you in my prayers.