- CASE FILE
January 2016 I began having left sided weakness with many other problems. My symptoms continue to worsen. Please help me find answers.
ABOUT THIS CASE FILE
I have left sided weakness especially after being physically active for any amount of time. I have constant burning on my left side from my head to my foot. I can feel when I touch the left side of my head, but if my husband kisses me on that side I can’t feel it at all. I have significant visual changes, with not being able to focus and sometimes double vision and the more fatigued my eyes are the worse my vision becomes or the worse the rest of my symptoms are the worse my vision is. I have extreme chronic fatigue. I have constant ringing in my ears and feel like I am losing my hearing to an extent because the ringing is so loud. My ears ring so loud that it sometimes keeps me awake. I also have stiff and painful muscles and joints especially in my spine. There are times that sharp pains will just shoot through my bones. I have difficulty swallowing with food and pills getting stuck in my throat and sometimes will come back up hours later completely undigested. I have intolerance to heat with dizziness, light headedness, and cold sweats. I also have intolerance of extreme cold with uncontrollable shaking and the inability to get warm. I have bouts where I will itch all over with no rash or anything and if I scratch one spot it shoots to a different spot, this is sometimes so bad that I will scratch until I have huge bruises. I have hot flashes where I will become extremely hot with sweating just randomly, with hormones being tested as a cause of this and they were normal, and many times during these hot flashes I will have hard chills which makes no sense. I have cluster headaches that start with an extremely itchy spot on my head and then turn into cluster headaches that last days to weeks. I have sharp shooting left eye pain, left ear pain, and left jaw pain, this is continuous. I had a biopsy that showed small fiber neuropathy, but don’t know the cause. I have been through MRI’s, lumbar punctures, blood test, specialty MRI’s with no definitive answers other that I have some sort of autoimmune disease. I have been to specialist after specialist and one would diagnose me with something and then the next doctor would say no that’s not it. I have been turned down by a top diagnostic clinic twice and one of the country’s top autoimmune neurologists, and the majority of the other doctors I have seen just want to place me on an immunosuppressant and not find the actual cause of what we are treating. I have medical debt that I will probably never be able to pay off and makes me want to just stop trying to find the answer and give up because we can’t afford anymore. When this first started I tested positive for Epstein Barr Virus and continue to test positive for it. I have had shingles twice, once on the left side of the inside of my mouth and one minor case on my left shoulder. I have chronic constipation and just simply don’t feel the urge to go until my abdomen is distended and I take something to help me go. I also have bouts of forgetfulness with word finding problems and even sometimes difficulty with body awareness with running into door jams, bumping my head on things, etc. I have ataxic movement that is becoming almost a daily occurrence. I also have balance issues periodically where I will just be standing and lose my balance. I have been placed on steroids for over a year with little relief or improvement during that time. I have had Solumederol infusions with no relief. I am on Gabapentin for the burning, with little relief. I honestly am not sure this is everything. My symptoms have progressively gotten worse over the last 3 1/2+ years and I am so afraid that eventually I will lose my mobility, vision, or worse. My neurologist has been amazing through all of this and is still tirelessly searching for an answer, but is running out of ideas and out of places to refer me. I should also mention that there is a family history of autoimmune with MS on both sides of my dad’s family, my dad has an unknown autoimmune disorder, and my sister was diagnosed with MS just last year. I would so appreciate anything ideas that anyone could offer to maybe help me find answers. I just want quality of life back so I can be the wife, mother, sister, aunt, and daughter my family deserves.