Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going. Well, that's me.