Posted 6/16/2013 2:56 PM (GMT -7)
Please help, I'm at my wits end! I'll try to keep this post as short as possible, but I have so many questions and issues!
I have been having neurological issues for 16 months now. It started with dizziness, migraines, numbness/tingling (the feeling of my mind not being attached to my body), trouble walking, difficulty focusing (eyes and mind), nausea, staring spells that I don’t know I’m having until I snap out of it and I realize I don’t know what I was doing... this list goes on and all my symptoms got worse with heat and/or physical exertion. At the peak of the migraines I lost vision in one eye. At the peak of the staring spells I “came to” while driving and I had no idea where I was… even though I was on the road I lived on. I kept driving past my house because I couldn’t tell where I was, but I had lived there for years! I frequently lose feeling, mainly in my arms, but when I can feel my body it’s all in pain. My skin hurts to touch and my joints are absolutely terrible, with knees, neck, and shoulders being the worst. My wrists/hands and ankles/feet swell up with minimal use (typing this hurts considerably).
The most prevalent symptoms now are joint pain, ringing in my ears, fatigue, memory loss, nausea (hard to eat, always feel full and like something is in my throat), muscle weakness (going down stairs is scary because of how shaky I am - that may be getting worse because of how little I eat), and everything still gets worse with exposure to heat. I sweat constantly, sometimes just from sitting and watching TV. I have a fan now that I move from room to room with me. It takes me well over an hour to stop sweating and cool down after showering. I’ve started trying to go back to work, and all the old symptoms are coming back because of the physical exertion it takes just to get out the door in the morning. I spend a lot of time at work typing reports, so I notice my issues when I try to use computers. My vision “shakes,” if that makes sense. I have to keep consciously telling my eyes to focus on what I’m looking at. A lot of my symptoms get worse at night when I try to relax. I get strong electricity type waves that start in my head and neck and go down my spine and into my extremities. It creates a terrible feeling in all of my muscles that makes my whole body start to feel like clenching or moving my muscles is the only thing to do to try to stop it all. My neck, back, thighs, and arms seem to get the worst of it, and I usually end up in the fetal position with random muscles flexing through the sensations. WHAT’S HAPPENING TO ME?!?!
So, I’ve been seeing doctors for over a year. I’m trying to keep this short, I promise. Major issues found: abnormal EEG grade 3 with absence seizures, growing cyst on pineal gland (grew from 7mm to 8mm in one year), fibromyalgia, sleep apnea, my blood levels are all off (low testosterone, B-12, and vitamin D being the ones I’m taking medication for). My neurologist thought at first that I had a viral infection in my brain, but now he’s absolutely convinced I have early onset MS. All the MRIs have been clear (except for the pineal cyst), and I had a lumbar puncture done that was also clear. According to a lot of my research MS and pineal cysts each independently could cause the vast majority of my symptoms. Last Friday I went to see a neurologist at the Cleveland Clinic. I was very excited because they’re the fourth best hospital in the nation! The doctor said it wasn’t MS or the pineal cyst, but the seizure disorder. For over a year now the seizure disorder has been an afterthought, with everyone thinking it was a symptom of something bigger at work. Now I’m told the seizure disorder could be causing everything! At the appointment I was trying to fit a year and a half of medical history into a ten minute window, so I’m thinking the doctor wasn’t making an informed decision.
My bosses/work can’t wait much longer for answers. I starting to wonder how I’ll be supporting a family six months from now. Does anyone have any guidance, answers, experience… anything at all to share? Thank you for the help and your time!