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Originally Posted by EnglishSue
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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.
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Hello sue, sorry to hear your struggles. As I read your symptoms I couldn't help thinking you are describing me daily. yes I have been diagnosed with MG, but nothing the docs do so far seems to give me relief. I am on verge of crisis right now, waiting on call from doc to go try another procedure. Rituximab.. as I read about it, it sounds scary, but I have become so weak, I don't care...
I too have gotten buried in medical debt.bill collectors call, I just tell them as soon as I get cured I promise to get some kind of job and make payments. I did have funding from a hospital but the docs knew better and brought all kinds of out of network expenses in without notifying me while I was in ICU last trip. But even though I didn't know the bills are mine...So I understand that pain. Again I have gotten to weak to care....
When I sleep its sometimes minutes, but may achieve an hour before waking choking of vomiting, gasping for a breath. this continues 24 hours a day I have learned to stay calm and bend my head a certain way to allow the air to pass through slowly but surly.... oh well it is what it is..
Sometimes i spend days flipping from one side to another, barely able to get up and go to the bathroom, my wife and son try and make me comfortable, but really there is nothing they can do.... I am just to tired to do anything..
This summer, I made my wife take our 13 year old son on vacation. Had her stock the fridge with easy to make food, I survived 10 days on my own.. it actually helped because I didn't feel the guilt of them watching me , a once very strong hard working man deteriorate into something else.. this seeing them have fun, made me happy..
They are now starting to realize this is my reality, and their life is continuing again, for this I get joy and thank God..
As for me I believe in God, I believe Jesus Christ is my lord and savior, I believe there is a purpose for this, and I also believe it is not from me being a sinner, I have truly repented and given my mind, heart and sole to God and pray his will be done....
So in concluding , even if you are not Christian, I will pray for you and ask God that I take your burden even if just for a day, that you may receive wisdom, guidance, strength and health...
Dan