Hi, I'm a 26 year old female having strange symptoms. I have been diagnosed as having an autoimmune disease, but my doctors are trying to figure out what one I have. Over last summer I noticed I would get attacks that were somewhat like panic attacks but were not. I would wave dizziness, blurry vision/tunnel vision, scotomas, visual snow/zigzag lines, myoclonic tremors in my arms/legs/back, numbness in my extremities, increased heart rate, nausea, I would feel as though I was becoming unable to breathe on my own or get proper breaths, and feel like I was going to black out, go blind or start convulsing. They would come on from taking medicines and drinking and last anywhere from 5 minutes to a few hours. After these symptoms began I started having urinary and bowel dysfunction. I kept thinking I was getting UTIs, but I would get tested and my doctor couldn't find any bacteria. I started getting nausea, vomiting or dry heaves everyday in the morning. I got CT scans, blood work, liver tests, you name it, I had it, but they could not find anything. After all this I started getting a red face everyday, that would get really bright at times and last anywhere from hours to days. I would also get short of breath, especially when walking up stairs. The myoclonic jerks kept getting worse, and I would develop episodes where I would make involuntary sighs or noises. My doctor ordered an EEG, but it came back normal, even though I was having myoclonus during it.
Then over winter I developed new symptoms. I would start feeling coldness, numbness and tingling in my hands, face, chest arms and legs. Sometimes I feel like cold water is running down the back of my leg. My circulation started feeling poor. I also noticed my hands, knees and feet were turning bright red. My toes were turning purple and my fingers would turn red and white in response to cold temperature. My doctor and I think it's Raynaud's Phenomenon. But it doesn't end there, now I'm starting to get purple patches on my legs, I can see my major arteries in my arms and legs. My skin has a veiny appearance. I think it's livedo reticularis. Then a few weeks ago after having bad chest pain, my doctors found a granuloma in my lung and that my lymph nodes were abnormally large. My GP thinks it's sarcoidosis, but when I saw a pulmonologist he thought it wasn't. He did a bronchoscophy on my lung last week, and I'm waiting on the results. My GP thinks its a fungal infection from an autoimmune disease, she also thinks I have ankylosing spondylitis, as she saw some inflammation in my spine. I've noticed I have been having pain in my spine and limited modion, as it's harder for me to look side to side. I also get zapping sensations in my spine as well. My GP also found that I had a vitamin D deficiency.
I had tests for Lupus, but they came back negative. I saw a Rheumatologist who thought I had a neurological disorder. I saw another one who thinks I have an autoimmune disease, but cannot say what one. The same goes for my GP. My pulmonoligst doesn't know what to think at all. I think I have an autoimmune disease but I'm convinced it's either Lupus or MS. My mom has epilepsy and she once told me that somewhere in my family, someone had MS. I really don't know what to think at this point. I guess my next step is to beg for an MRI. Do my symptoms sound like MS?