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Need Help - Hematology won't do testing
Blood Cancers & Disorders | Last Active: Jan 30, 2023 | Replies (77)Comment receiving replies
Posted by wiggins32 @wiggins32, Nov 28, 2022 My heat goes out to you. I have Polycythmia/ Myelofibrosis (Leukemia) Born with Cold anaphylaxis shock = never got diagnosed until I moved to Florida.) Home Hospital Study with weekly nurse growing up., years with vocational rehabilitation; I can't work , trying to get on SSI and judges don't believe in rare diagnosis. Doctor notes; Can't work; Every time I worked, cough, vomit, lost my voice, pass out, racy heart (zoom to 200/150 BP) not zoom down All the cardiologist told me my heart was fine, only 50 years later I must of had unknow blood disease; like my 40 year old who died 2 hours after she saw doctor, that said you broke your leg, didn't listen to other symptoms. your fine go home = death! Same with cold urticaria; Facebook CIU; 1# issue It's life-threatening and people laugh and make fun of you. No one believe you can died feeling cold. Lucy didn't have cold urticaria; unknown blood disorder - corner couldn't diagnosed it; but he found blood disorder the doctors all missed. Because it's rare , we get passed, skip and ignored. I'm sorry
Replies to "Posted by wiggins32 @wiggins32, Nov 28, 2022 My heat goes out to you. I have Polycythmia/..."
Not to add fuel to frustrations of misdiagnosis by doctors, but I was in hospital in 2021 with Acute anemia (HGB was 6.5) and acute pancreatitis. My WBC were thru the roof, and platelets 1,000. Had already been dx with a bacterial infection by my PCP. The hospitalist took easy road and determined that I had alcohol-induced pancreatitis (I don't even drink). Basically threw me to the curb thru discharge, only for me to return 3 hrs later via ambulance. I refused to return to that hospital and will never go back. The worst part was being mocked by the nursing staff bc the doctor had encouraged them. It was so humiliating.
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Oh my. I can't imagine the nightmare of lifelong disease with no support, answers, and no way to earn a living. I'm so sorry. And you lost your daughter too? I'm so very sad for you. The only way to get approved for disability is with a lawyer, sorry to say. Do you have emotional support from friends and family? The hardest part is isolation for me. I'm also in Florida. How does the heat effect you?