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What was your journey to diagnosis and how long did it take?
Hello . I am new here. I'm not diagnosed with anything , but I share a lot of the same symptoms. My question is to please describe your journey in being diagnosed with lupus, from the start of your symptoms to developing symptoms, to doctor appointments, how those appointments went, when bloodwork and other diagnostic tests were performed. Please list anything that you feel would help someone to get a diagnosis. I have been seeing my rheumatologist just over a year now. As of right now, I have a low + ANA 1:60 homogeneous and speckled; SM antibody was 2.3 and my SM/RNP antibody 1.1 ( both slightly positive). I tested negative for Sjorgrens. These were done a year ago. After having to find another PCP, I was told i had a recent mono infection around the same time this bloodwork was performed. My body went through a lot of stress that year. At that time my 1.5 year old got sick a lot in daycare and we had to miss work a few times. Our new manager at the time made me feel like I was going to lose my job. ( she is no longer there). I began to feel I'll myself from this stress. At this time my old PCP adjusted my anxiety medications, which I suffered from side effects for months ( as well as the unknown mono infection). They told me it was all in my head, even though I asked if it was the side effects at several appointments. After self weening, I felt better and then decided I didn't want to be on any medicines for a while. A few months later, I got pregnant ( now he is 2 months old). I was miserable that pregnancy. He was my second. I meediately felt better once he was out, but now I just don't feel right again. Now I need to mention earlier last year and through the mono and medication changes I had a colonoscopy/endoscopy ( normal). Then my OBGYN thought I possibly had endometriosis and did an abdominal scope. She found nothing but I ended up in the ER the next night due to a hemerroid irritation ( TMI- I'm sorry). This wore me out for over a week. I did not lose enough blood for a transfusion but I was exhausted beyond I ever imagined. My OB wasn't sure why that happened. Well, I still suffered from nausea so my GI did an ultrasound and hyta scan for my gall bladder. It has a low ejection fraction and combined with my nausea and pain ( no stones) they recommended it come out, but that I could change my diet in the meantime. Well, then I got pregnant and here I am now. I'm scheduled to have my gall bladder out May 19 and I'm kinda terrified at how my body will respond. I'm having it out before I return to work after Memorial Day because I won't have any time off when I return because I will have to accrue it again. I don't want that increased stress later on if this fall bkadder became an emergency procedure.
Symptom: initially had complaints of fatigue. Rheumatologist asked more questions and I have general aching, but wasn't painful . Now I can go back to when I was young. ( I'm 30 now). I remember asking my mom to give me massages between my shoulders and neck all the time because they ached. In my late teens/early 20s I complained of chest pain and was told they were growing pains or costochondritis. I played volleyball, ran track n field, and was on the weight lifting team. I didn't notice anything but brusing easily. After having kids I have developed anxiety and insomnia. I am a worrier now. I'm tired but not as tired as when I had the mono. I always feel like I need a massage. My massage therapist says my neck and shoulder blades are pretty bad. After my first pregnancy and after I stopped breastfeeding my eyes got dry as well as the skin on my lower legs. I had to use eye drops and steroid cream for the dry legs. . My second pregnancy I caught every cold my 2 year old brought home so I felt sick the whole time. I saw an opthamologist for my dry eyes and he saw no inflammation in them. He said it could be from lupus or hormones. I forgot to mention I noticed I had redness in the back of my arms after this stress at work, and I was told it is livedo reticularis ( from an immunologist) By the way he tested me for allergies- all negative. He tested my lungs ( normal). And when those anxiety meds were causing me trouble- instead of weening me off them the doctor sent me for a tilt table test and an ECHO of my heart ( both normal). Now my complaints are: fatigue, dry eyes, dry mouth, dry skin and hair, brittle nails ( always have had that), and dry lips; my hair is possibly falling out, persistent joint aching specifically in the fingers and hips, but I feel stiff all over. I have insomnia, anxiety. Muscle aching, muscle twitching and jerking at times. I'm stiff when I first wake up and it's hard to get out of bed. I love my sleep. And just a little over a week ago, I now feel my body vibrating, especially my legs. I saw a neurologist this week for my headaches- he said neurological symptoms are normal with migraines and that my legs vibrating could be restless legs, the twitching could be benign fasiculations. He said some people complain of thatbwith ALS but since I didn't have weakness he wasn't worried. He recommended I get my thyroid tested for the night sweats, but I'm 2 months post partum so it could be hormones adjusting. He mentioned iron or other deficiencies causing the twitching and spasms. Who knows. Sometimes I get hot/cold feelings through my blood. I have deep bone pains sometimes, chest pains occasionally , brain fog, vertigo/dizziness, motion sickness. I have some numbness and tingling if I bend my elbow too long or sit funny. I suffer from headaches/migraines with neurological symptoms ( MRI negative). Forgot to mention lover/kidney enzymes normal. All other bloodwork normal. I may have left a few symptoms off that I can't think of. My body just doesn't feel right. I know I'm stressed and tired, but I just pray and do what I need to do. I am not a complainer so for me to mention all this means something to me. I am breastfeeding and am limited on what I can take. My rheumatologist has me taking Vit D and opthamologist recommended fish oil for dry eyes. Other than that I drink lots of water. I'm glad I'm not diagnosed but I also know something just isn't right.
Symptom: initially had complaints of fatigue. Rheumatologist asked more questions and I have general aching, but wasn't painful . Now I can go back to when I was young. ( I'm 30 now). I remember asking my mom to give me massages between my shoulders and neck all the time because they ached. In my late teens/early 20s I complained of chest pain and was told they were growing pains or costochondritis. I played volleyball, ran track n field, and was on the weight lifting team. I didn't notice anything but brusing easily. After having kids I have developed anxiety and insomnia. I am a worrier now. I'm tired but not as tired as when I had the mono. I always feel like I need a massage. My massage therapist says my neck and shoulder blades are pretty bad. After my first pregnancy and after I stopped breastfeeding my eyes got dry as well as the skin on my lower legs. I had to use eye drops and steroid cream for the dry legs. . My second pregnancy I caught every cold my 2 year old brought home so I felt sick the whole time. I saw an opthamologist for my dry eyes and he saw no inflammation in them. He said it could be from lupus or hormones. I forgot to mention I noticed I had redness in the back of my arms after this stress at work, and I was told it is livedo reticularis ( from an immunologist) By the way he tested me for allergies- all negative. He tested my lungs ( normal). And when those anxiety meds were causing me trouble- instead of weening me off them the doctor sent me for a tilt table test and an ECHO of my heart ( both normal). Now my complaints are: fatigue, dry eyes, dry mouth, dry skin and hair, brittle nails ( always have had that), and dry lips; my hair is possibly falling out, persistent joint aching specifically in the fingers and hips, but I feel stiff all over. I have insomnia, anxiety. Muscle aching, muscle twitching and jerking at times. I'm stiff when I first wake up and it's hard to get out of bed. I love my sleep. And just a little over a week ago, I now feel my body vibrating, especially my legs. I saw a neurologist this week for my headaches- he said neurological symptoms are normal with migraines and that my legs vibrating could be restless legs, the twitching could be benign fasiculations. He said some people complain of thatbwith ALS but since I didn't have weakness he wasn't worried. He recommended I get my thyroid tested for the night sweats, but I'm 2 months post partum so it could be hormones adjusting. He mentioned iron or other deficiencies causing the twitching and spasms. Who knows. Sometimes I get hot/cold feelings through my blood. I have deep bone pains sometimes, chest pains occasionally , brain fog, vertigo/dizziness, motion sickness. I have some numbness and tingling if I bend my elbow too long or sit funny. I suffer from headaches/migraines with neurological symptoms ( MRI negative). Forgot to mention lover/kidney enzymes normal. All other bloodwork normal. I may have left a few symptoms off that I can't think of. My body just doesn't feel right. I know I'm stressed and tired, but I just pray and do what I need to do. I am not a complainer so for me to mention all this means something to me. I am breastfeeding and am limited on what I can take. My rheumatologist has me taking Vit D and opthamologist recommended fish oil for dry eyes. Other than that I drink lots of water. I'm glad I'm not diagnosed but I also know something just isn't right.
it kind of sounds to me like you had reactivated Ebstien Barr Virus. After having mono your body keeps it under wraps but it never truly goes away. sometimes it can reactivate when the conditions are right or the body is under a lot of stress like having a baby comes to mind ; ) you should ask your doctor about EBV. I hope you find the answers you are looking for. i understand how difficult it can be not knowing why you feel the way you do.
I think I'm in your boat as well. I was going to suggest the Vit D check and then saw at the bottom of your post you're taking it. That's the only thing that has helped me out tremendously with not being sick so much. My first year fighting all this, I couldn't walk within 20 feet of someone who had a cold or the flu without getting it. I was sick all the time. I take 10,000 units of Vitamin D daily, cut down me being sick significantly. Now if I could just find an answer to the major issue!!
During the pregnancy my bloodwork improved, and post partum I only have slight + ANA. Other labs are fine. Forgot to mention, I've always had rosy cheeks but no butterfly rash. I would get sun spots but no rash. Just noticed both my knees have a dark dry hard patch on them. Not itchy or tender. But I've been bahing my infant in our gym so I'm on my knees they past few weeks.
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