I have never posted on any kind of forum before but I am quickly running out options. First of all let me say I am very sorry for those who have been having problems for years and are still not diagnosed, I can only imagine how horrible it must be. I am a 30 year mother of 2. July 2012, I woke up with the left side of my face completly numb, went to the er- CT scan, EKG, chest xray, labs, etc all normal. The numbing came back and I learned how to ignore it. Since there was no "immediate problem" I lived with it. Feb 2013- I was sitting on the couch and I felt a pop in my neck, when I stood up, it felt like hot water rushing down the left side of my body and i could not move my arm, by the time I got to the er (10mins) I couldn't walk, speaking was hard, Had a ct with contrast (head and c spine) and another without contract, ekg, chest xray, labs etc again- all normal. I started feeling better a few hours after being there.
Since then, I have had numbing. My lymph nodes above my right clavicle, base of head, on sternum, armpit, under chin, and elbow are swollen. The one above my collarbone feels like a fluid pocket and it will move to the base of my skull and the movement leaves a red streak on my skin. I am getting "hot fluid" like rushes in my abdomen, my bp went up to 120/81 ( yes, I know its normal, but for me I have always been VERY low 100/60) low grade fever 101. my right arm is swollen, i have purple and red splotches around my knees, bruises appearing and I dont remember doing anything to get them. Doctors have said- bells palsy, pulled shoulder muscle,aggrevation to a clavicle break from when I was 5. I have a neuro appt later this month, but I cant wait, I feel like I am 100 years old. I have 2 little girls and I am in nursing school, Its affecting everything I do. My joints hurt, I have gained 15 lbs in the last 1.5 weeks, of fluid! I also have labs out for lyme now, but I am afraid it will come back negative, whether I have it or not. Any suggestions??