I want to ask for some time off of work to regroup and help with some of my fatigue but I’m afraid she’s going to say no lol . How did you guys go about asking?
I wasn’t expecting Lupus to hit me this hard and this fast! I’m only 2 months into the official diagnosis although suspected I’ve had it for a few years now. I have a successful business and work full time for a company and it’s beginning to affect both. I’m so drained and have to cancel business orders. Some customers have been understanding and some not so much. I just wasn’t expecting the symptoms to hit me so hard so fast. I was flooded with symptoms in 2 months time. I’m so exhausted and I just want to feel some what better. I feel like I’m disappointing my customers and my regular job. just venting…..
I was super nervous for whatever reason lol! I do have a headache but I’ve been on prednisone taper for my headaches and it was working so I don’t know if nerves just stirred up my headache this afternoon. Suspected Neuro-Lupus! Infusion went super well 🤞🏽for great results!
If allowed I wanted to update and say thank you! I came here a few times venting about potientally being diagnosed with FND and not knowing much about it and many many of you were super helpful! You guys are super supportive here and explained so much more than my doctor! I wasn’t sure! My neurologist is now leaning away from this diagnosis as we found new things and likely found a cause for all my symptoms. Will update once I have my first treatment!
Hello everyone,
Those who get the Mouth Sores are they similar to Canker Sores? I keep getting them over and over again and I was trying to determine are they true Lupus Mouth Sores or Canker Sores. I brush my teeth and rinse every day btw but they keep coming. Currently in a flare if it makes a difference. Going to ask my rheumatologist at my next appointment, but it’s not for a while.
Just laying in bed thinking about how I was not ready for this lupus battle one bit, it was thrown at me so hard and came full force. Not much information was given to me, but here take this medicine. Neurologist and Rheumatologist suspects Neuro Lupus. I have gone through trouble walking, trouble speaking, dropping things, untreatable headaches ect in just a short period of time. The joint pain is unreal. I was not ready for at all this. Rheumatologist suspects I’ve had it at least 5 years without realizing what my aches and pains were. I’m going to be good, but I definitely wasn’t ready. My family was like why you accepting that diagnosis and claiming it blah blah blah. I was like do yall not see me 😮💨
My neurologist is leaning towards this and I’m wondering if anyone here has it? What are you symptoms?
I’m nervous and I don’t know why. What should I expect? I get my first infusion next Tuesday!
Hello everyone long post…
Today I told my doctor I cancelled my other appointment with her cause I didn’t want to be a bother and I don’t want anyone to think I’m coming to the doctor cause I’m stressed or depressed. She said please message me whenever anything happens. Message her whenever and never be afraid to speak up and don’t be shy and I’m not a bother one bit. I don’t know why, but it make feel okay because I was starting to feel like canceling all my appointments and just deal with the neuro stuff. She promised we’re going to get to the bottom of everything. I was a little discourged leading up to this appointment. Not sure if you’ve guys seen my venting posts, but I’ve been following neurology and Neuro-ophthalmology for all my neuro issues because my original neurologist put that she felt like my issues were stress related and they wouldn’t run any additional tests while I was in the ER for the worst pain of my life or hear me out and the neurologist I saw in the ER was an jerk. He was like nothing is wrong this is just stress and anxiet. I’m not stressed one bit!!!!!!!!! Anyway before any testing at my appointment the first thing the doctor asked me was I stressed and have I had any traumatic experiences recently because thats what the ER neurologist put in my chart and my original neurologist. I literally told neither of them that.
I’ve been admitted for status migraines in past, yesterday the first thing they asked me was I stressed or depressed and they felt like I needed to talk to psychiatry. I honestly the past couple months has made me feel never want to go to another doctor for a headache again or any other symptoms for that matter. I ended up in the hospital because Ive been dizziness and couldn’t find my words, felt like I was going to pass out, and felt like I was being stabbed in the eye. The moment they brought that up I told them I felt better and decided to leave even though I feel like shit still. I just lied so I could leave.
I’ve had migraine since I was 10 years old. I’m talking daily. Recently they’ve turned into ocular migraines and I keep losing my vision. My mri shoes periventricular lesions which is constient with migraines.
The fact that I have a great life mostly stress free like is blowing me. I’m about to say screw seeing neurologist and just continue to deal with them by myself. They didnt run any tests beside bloodwork and basically told me I was crazy and my headaches are psychosomatic. I felt like they were callijg me crazy.
I’m super excited! They almost always deny my prescriptions and always want me to try something new! I’m just ready to feel better honestly!
I’m only asking because my neurologist mentioned the possibility of FND I haven’t been diagnosed with it, but after reading causes and symptoms I’m almost certain I don’t have. I have small periventricular Lesions, Cervical Syrinx (small), small ventricles (possibility of IIH) . I was on board until I started researching and reading. I have other autoimmune conditions so I’m wondering if my symptoms are autoimmune and not FND. I recently was on a course of steroids and my symptoms went away. I’m starting to wondering I’m just being labeled as FND or am I just in denial?
I have a syrinx that extends from c5-c8 with the majority of fluid at c6. 3.6mm diameter it was incidental finding. Per neurology I don’t have Chiari Malformation, Tumor or Tramatic Injury. I was just wondering if anyone recieved explanations for theirs. Also, did yours increase over time?
I have insurance awaiting approvals, but I’m trying to get an ballpark range of how much I’m going to have to pay each month for the infusions.
Hello everyone,
I was just newly diagnosed with Lupus 😭 I will be starting Saphnelo in the next couple weeks and I’m just soooooooo nervous and scared 😭😭😭 I feel good knowing what’s wrong with me, but I’ve been denial about having Lupus while waiting for all my tests to come back. I just need some words of encouragement!
I have never cried,but I have an appointment coming up and I can feel some tears are going to be shed. I’m not even a crier, but all the neuro symptoms that migraines are causing are probably going to drive me to tears once I get in that office. 😭
Post got removed but I wanted to repost the Eastern Box Turtle I found in my yard. We had a lot of rain this past week and he was so pretty and vibrant orange. Maryland
Vent:
Hello everyone just wanted to introduce myself. I suffer from Occular Migraines which make me completely lose my vision in one eye or cause visual color change. I also get status migrainosus. I’ve had a million Mris and everything is always normal except for the possibility of IIH and they always say I don’t fit the criteria for it. I’m on a billion migraine medicines yet I still get migraines daily. I’ve pretty much accepted my fate that I’m going to either go blind from a migraine lol or suffer from them for the rest of my life. I feel like now that all the bad stuff have been ruled out my neurologist no longer cares because it’s just a migraine. Again, I have somewhat trained my mind into them not being that painful. I just hate losing my vision and then thinking something bad is happening. I’ve had blurry, whiteouts, blackouts, brightness, problems with my eye picking up the color red. I’ve tried so many preventatives, seizure medicines, you name it and yet I still get migraines 😆 Sometimes I wish there was a reason for these migraines, but I feel like when it’s just migraines it’s written off or overlooked because ”it’s a migraine“. I have visual loss for days, horrible dizzines, pain behind the eye! I’m just over it. I even have white matter lesions from them so it’s real. Vent over!