Blood work

Stephanie846

Hi- so 5-6 years ago I had a positive ANA test and was told to see a rheumatologist. I was told nothing else so not knowing rheumatologists handle more than rheumatoid arthritis... I did not go. I have been sick for around 13 years now and no one has been able to figure out what it is. My new primary retested me for ANA and did a specific lupus antibody test. Surprisingly the ANA came back negative this time but the lupus antibody test was “indeterminate” at a level of 9, 10 being positive. She wants me to see a rheumatologist. I also have low vitamin D as always. I am scared of a lupus diagnosis. Has anyone had test results like this? Where I live I have to wait over a month to see a rheumatologist and I’d just like some insight. 

Thanks!

MsMe

Hey Stephanie. What is the deal with these rheumatology appointments? I live in Central Florida and called 9 different places, the soonest appointment is 3 months out and most are 6 months! If anyone asks what field of medicine they should go to school for, recommend rheumatology bc apparently, there's a shortage! But I was told they are more of the Sherlock Holmes or Gregory House's of the doctors. They are better at finding the answers to the mystery symptoms that some of us have.  I am still waiting for my appointment and diagnosis but I can tell you this... My Aunt has been diagnosed and treated for Lupus for years. Her and her 2 daughters have all had negative and positive ANA tests. The daughter that most frequently tests positive has never had a symptom and the one who mostly test negative has had many symptoms and flare ups. From what I understand, Lupus is hard to definitively diagnose. Depending on which you may have, there can be flare ups. I have always had low vit D as well (15.1) and my doctor put me on 50,000 unit of vit D 2 times week for 8 months and every other doctor that heard that flipped out lol. During routine bloodwork my kidney gfr went down 10 points to 55 I was concerned and consulted with a Nephrologist. He and I decided to try a less extreme approach. I stopped the high dose, waited 2 months, my kidney function went back up and now I take 2,000 Vit D and a multi vitamin with 1,000 and after 4 months I am at 33.4 on my bloodwork for vit D.  So, you may need some trial and error with that and everyone's body is different but I feel much better when it is not so low. (Less: fatigue, joint pain, heart palpitations, I wake better rested, and less UTI's).
Don't be afraid of a Lupus diagnosis, you can still live a fairly healthy, active life. It is a lifestyle change (adjustment), it will have ups and downs, good days and bad but there are worse things. Having an answer, for some people, can actually lower your stress and fear and help you have more control over your emotions. I am still looking for my answers and the not knowing SUCKS.  Seeing normal results when you don't feel normal, seeing abnormal results and having your doctor say "eh, it's fine. Just exercise" when exercise causes joint pain, fatigue, low grade fevers later that day, you have shortness of breath and you feel like utter crap the whole next day does NOT seem to make any sense. My Aunt says to do what your body says as long as it's not an unhealthy thing. If you feel like you need to take it easy, then do it, if you feel like you could get some exercise then go for it, but don't push too hard. She recommended natural foods that have anti inflammatory properties in them, just always do your research. When you get a diagnosis you don't have to worry about all of the other things it could be. You'll know what it is, have the chance to come to terms with it, and can make a plan. "Be a Pineapple"! 
Sabrina