In september of 2007 my life changed in a split second. A relaxing country drive was stopped by a sudden, intense migraine ( before that day i rarely got headaches, and greatfully hadnt been cursed with migraines. I had to lay down,i was totally overcome by it. I somehow fell asleep and was horrified when i woke up and had lost my peripheral vision in my left eye. I convinced myself and my family it was easily explained by work,lack of sleep, migraine related etc. 2 weeks and no improvement, 1 doctors appointment and a c.t scan ...they found out i have a avm (that was large and looked like it was going to rupture) i was sad,scared and shocked but felt relief that they had found it. My first neuro was so brutal.i saw him asap, he told me my avm was nothing and as far as he was concerned i wasnt ill...it was because i was fat,smoked and took birth control.(i had gained 40lbs in the 2weeks since my migraine and 170 when ur 5'6 ....thats not fat) he made his report on me ....said i was as healthy ...1 month later ....pandoras box opened...i was rapidly overtaken by a flood of symptoms. The worst of it....no answer what the cause is. I will make this long story short..........i sit here...coming up on 2 years of this nightmare...i have been to a large variety of specialists from neuro to internalist to rheumotologists to optho to cancer specialists, have given so much blood (for tests) the nurse(s) know all my info off by heart , i have had xrays,mris,ct scans,ultrasounds,biopsys,eegs, i have been poked and proded in almost every spot on my body....i have been seen by some of the best ( the ones with a 4yr wait time min. Thats if they even take you) with all of this...no answers.........no closer to dx. I have been given a massive assortment of treatments(pills) from methotrexate to migraine pills....and not one has worked...at all. Im sorry its so lengthy but my hope is someone may read this and be able to help me. My biggest problem is with every test i have had they all come back with abnormalities...ex. Normal eeg is about 8 mghz ...mine...almost 20mghz...even after 3 days of 0 medications. Blood tests show a minimum of 15 abnormalities the worst being inflammation,platelets too high, wbc.egfr, lungs show perfect but i frequently stop breathing, memory loss, whole left side goes dead/limp. Hairloss, weight gain/loss, insominia or sleep all the time, unexplained bruising,swelling,dry eyes,mouth etc. Timeloss, nauseau,dizzy,weak.......and about 80 more symptoms but i have a few symptoms that are a total mystery. Not a doctor,speacialist,website,person has had,seen,heard of it. I feel completly alone,terrified,,no info,answers not even a hunch. I have lumps (like a goose egg) that continually grow,shrink,change locations,create so much pressure(and depending on the location they causes drastic personality/behaviour changes...that im usually unaware of and have no control of)the pain/pressure leaves me completly helpless to the point i cant even lift my head. They radiate heat like crazy(hot to the touch)they started october 2007 and are 24/7 always moving,changing,sometimes they make divets/grooves as well.they grow anywhere from the base of my skull to my eyebrows . The lumps on my forehead are surrounded by bruises that spreads to my eyes.(i look beat up). Another unexplained symptom is my ears go so hot they turn red/purple and literaly blow heat out from the ear canals.(you can feel it up to a foot away.)i also lose my ability to swallow and have to stand and manually force myself as well as my throat /neck swells almost double in size and if i lay down my throat collapses and i stop breathing. (it feels like/looks like severe allergic reaction)i have to force myself to remain calm and upright.i search every day for answers,info,someone who shares this nightmare .i have wrote this letter countless times,ready to post..then erased it all.it became to real and scary to admitt and face the facts.i am so thankful to each person who read this.i hope that someone will see this and know there info/experience etc is going to shed some light on my lifeReply Follow This Thread Stop Following This Thread Flag this Discussion
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