I'm brand new at all of this and feel lost. I can't believe all of these health issues I have been having for YEARS could be related to Lupus. Blood work, symptoms and family history all of a sudden point in this direction. Can't get in to see the doctor until Sept.15th. I'm frazzled but looking at everything that has physically been going on with my body and am just blown away at the fact that so much of it points at Lupus.
Welcome SuperGma, I don't have Lupus but I know what it feels like dealing with uncertainty and waiting to get diagnosed. I can imagine it would be a relief to finally have an explanation for all your symptoms. We have a couple of community members suffering from lupus and I am sure some of them will reply to your post.
I was diagnosed just over 3 months ago at 45. They're now thinking I've probably had lupus since I was a teen given I was diagnosed with epilepsy then, lost my bladder to IC at 28. I pursued answers for the last 2.5 years because of joint pain that started, spread fast to all my joints and got more and more severe. Lots of other weird things were going on as well such as swollen painful taste buds out of nowhere, infections, swollen glands, sun and heat sensitively and Raynaud's. I was told by 3 specialists, my GP, and a pain clinic that I had a bit of osteo in my hips and back and tennis elbow even though my ANA test was positive 3x. When the Raynaud's showed up was when my GP finally believed something more was going on and agreed to send me to an Internist. It was the Internist who diagnosed me almost right away. He took one look in my mouth and knew I was ill. You need 4 Lupus markers to be diagnosed. I have at least 8. How 2 Rheumies, and an ENT and my GP didn't clue in is beyond me. All my joints are full of lupus arthritis. I do have osteo in my hips and back, but I think it's complicated by lupus as there are times I can't walk. If you ever need to chat I'm happy too. Sorry you're going through this. Keep track of everything no matter how minor you may think it is. Lupus is very hard to diagnose and docs are very hesitant to diagnose it. It can mimic other illnesses and there are overlapping autoimmune diseases such as RA and Sjogrens. I wish you all the best.
Can you tell me what you mean by the internist looking in your mouth and knew it was Lupus? I have Fibromyalgia but suffer from all kinds of strange things doctors can't make sense of anything. I see an internist in November! All the doctors believe I suffer from an auto-immune disease as well as Fibromyalgia but nobody has a clue. What are the main symptoms of Lupus. I have several mouth infections and all my lymph nodes in my neck are swollen.
Anna I think it was red lines all on my inner lip and cheeks. He also felt swelling in all the joints I was told by the other docs didn't exist. As far as lupus it's different for everyone but some of the things docs will look for are sore swollen joints, ANA positive, rashes butterfly or otherwise (I don't have the rashes) mouth/nose ulcers, Raynaud's, photosensitivity, protein in your urine, high blood pressure, low grade fevers. You need 4 of the 11 markers to be diagnosed. I had a lot of weird things going on too. Infections out of nowhere, swollen painful taste buds, dry mouth, pain, Raynaud's. It's all been spreading, progressing and new things showing up fast and all the time. Swollen glands is another one. I suggest you write down everything you're experiencing even if it seems minor to you. I had 2 Rheumies, an ENT, a GP, and a pain clinic all blow me off saying nothing autoimmune was going on. When my jaw locked I went to my GP in one last ditch effort for help. While there my fingers turned blue in front of him. It was Raynaud's. He finally believed me and offered to send me to the Internist I had asked to see 8 months earlier. You sound like you could be dealing with something autoimmune. The other close neighbour to lupus is RA. You could ask to be tested for both. They are hard to diagnose and docs often hesitate to do so. Things come and go and symptoms can mimic other illnesses. I hope this helps. Feel free to ask if you have more questions.
Oh also blood tests are not definitive. You can test positive and be negative and vise versa. I tested positive for ANA 3x and docs still decided it was a false positive until I saw internist. All my other blood work was negative but I have lupus and they suspect Scleroderma. I'm also affected neurologically. I have epilepsy and I lost my bladder at 28 (now 45) to IC which they actually think was caused by lupus. So I've had the disease for many years but I was only diagnosed just over 3 months ago.
I did twork ANA tests in a month, one was negative the other positive. Same exact lab no rhyme or reason. The third one I did just a few months later was positive also. So the doctors really look at the diagnosis as pieces of a puzzle. Strange but true. Symptoms tell a story and complete the picture. Maybe in the near future we will have definitive testing until then journal all symptoms it matters.
Thanks for all of your advice! Everytime I would tell them a new symptom they ( doctors) would always just say it's Fibromyalgia!! But a lot of my symptoms are not related it's almost like a cop out! Anyway I will write all my symptoms down before I see the internist in November. I just hope she doesn't shuffle me out like every other specialist! Thanks for taking the time to share you stories it's so helpful! Sometimes I feel like I am completely crazy ! Xx