Need a second opinion
Ok this is the deal for the last year I have had an issue with a knuckle on my right hand making intolerable to use. I have seen two specialists before I came to this rheumatologist who is supposed to pretty good. He took a lot of blood and set me up to come back three weeks later. Well the next week I get a call from his nurse saying he wanted to see me a week early. Well that just about freaked me out but not as much as when I asked for my results she told me she couldn't tell me but she could fax the results to me which was good but also bad. I got the results 5 days before I saw him and had time to dwell on things. According the results and what he circled it says I am positive for Lupus. According these tests a positive reading is one between 61-200 IU/mL. Mine was 123. I do not see anywhere in these tests that have any numbers like you all show (1:???). When I did see him he did tell me that I did show positive for Lupus and he put me on Prednisone and wants me to come back in three weeks and he is going to put me on Plaquenil. Then he is going to monitor me every three months. He also said that I had a "touch of lupus" what is that? That is like saying I have a touch of a broken bone. My symptoms are achy joints and muscles, swelling and inflammation but only that one knuckle, hair loss, and low grade fevers. I have no rash or anything of that sort. He did say my thyroid was ok but he sees a problem with it down the line and I have since found out that my grandmother, mother and uncle all have thyroid issues. I called my regular doctor today and asked for a referral for a second opinion. So I am just asking any of you what you think because I don't know if I am just in denial or what but I would appreciate anything anyone can tell me. Thank you :?
While we can't diagnose on this board, we all understand the frustrations of trying to figure out what the heck is going on. And we can share knowledge and personal experiences to help each other through.
My lupus is considered mild - I was diagnosed after feeling like I had the flu for about a month non-stop. Much worse than the fatigue I'd been considering "normal" for years. I'd had thyroid problems years ago - (non-graves hyperthyroid) and thought my thyroid was going bonkers. But the tests showed that was OK and the ANA plus DS-DNA and other tests pointed to lupus. I avoided the prednisone, but have been on Plaquenil for several years - I consider it a lifesaver.
Not everyone gets the rash - so you can't tell by that alone.
You might want to ask your doc if they've done all the thyroid tests, just in case, since you do have a family history.
Be sure you go into your doctor's office with questions written down - I make 2 copies, one for me, one for her, and I expect that we will take the time to go through them. . And ask here - we learn so much from each other!
Hugs dear --
Me...One knuckle, two knuckle...it started with one. Least mine did. Then all of them. Onto the wrist, elbows, and feet..back up to the shoulders and the butt cheek joints...Headaches, insomnia, extreme fatigue, depression..and today another symptom of Lupus was diagnosed. Pleurisy.
My ANA was written like yours...not 1:xxx. I asked my Rheumatologist and he said that is new test. Difference labs, use different method to test he said. Mine was 144. The normal high range is no higher than 90 to come back negative he stated...confusing, yep.
I think they say things like touch..to minimize the shock maybe.
Indeed, get another opinion, another test..if you have doubts about the lab technician ask what lab they use, so it doesn't get repeated by the same place.
How are you feeling on Prednisone? Better? Keep us posted on your progress...
If you feel you are in denial, still take care of your health, rest, lower your stress, eat properly till you feel comfortable with a doctor and trust his diagnosis.
It's all about balance...a balancing act to keep well as well as we can get,