When it comes to statistics, Cushing’s Disease is not considered common, but experts believe it that may be in part due to the difficulty in diagnosing the condition.
I have Cushings Disease. You see a physician can’t get help. What is there for the rest of us? I was misdiagnosed w PCOS, many of us are. It was always Cushings. Took them 17 years to finally diagnose me. It’s FATAL left untreated. It’s a serious disease that will cause heart failure or stroke. Needs prompt treatment. Unfortunately physicians refuse to diagnose it!!!!!!
Its not that it is refused to diagnosed but its because most physicians do not always request lab or diagnostic tests in general if its costly only when symptoms becomes obvious that a diagnostic test is done for confirmation
Took me 7 years to diagnose myself and navigate the medical system to look into it further. Even today some dr will say are you sure?It is very rare you know…Sheesh! I carry my reports around when I go to a new Doc to prove it! Symptoms vary from patient to patient and it can be caused by Steroids or a pit or adrenal tumor. Removal is the only thing that can put you in remission. My surgery was 17 years ago and my guess is they still don’t have a great med to help with it so surgery is your only relief or having adrenals removed (very drastic but sometimes necessary). Horrible disease physically and psychologically.
I am at 30 months and when I heard that it can be missed in an MRI I seriously started crying. Two neurologist and three Ears have basically said it's all in my head and prescribed me antidepressants.
Over 8 years now in practical H.. still trying to get a dr who does their job. Before 2013 was super healthy. I tried to tell drs what it was.. THEY DON'T LISTEN, or TRY TO FIND OUT WHAT'S WRONG!! Even had blood tests that indicated a tumor. It's a crime for someone to LOSE 8 years of their life!! And, relationships and everything else, and the ability to work. NOT fair. Have been too sick (to GET to more appts, as they are hours away).
@@Nels1224 this is exactly what they said to me mine is 1mm small but the average size of a tumor is 3mm so i don’t see why they do not want to remove it. I have seen 3 endocrinologist and i still want to get a third opinion
There are other underreported diseases like epilepsy. People think because some people with epilepsy look normal they are okay. which it is completely opposite.
So make an epilepsy video. Those with Cushings Disease due to a pituitary tumor/ectopic tumor are people, mostly women, MOTHERS, and our lives matter, just as anyone else’s lives matter. We deserve awareness, especially by the physicians who diagnose and treat us! I was personally dismissed, treated like a psych patient and told I was fine, and blamed my anxiety for 15 years before ANYONE would even bother to test my cortisol. Only an entire YEAR after I CORRECTLY AND ACCURATELY self diagnosed and DEMANDED cortisol testing did I get it. Make no mistake, me and many other young women are dying and orphaning our children! This disease provides one of the worse quality of life there is imaginable and IS FATAL IF LEFT UNTREATED LONG TERM. PROGNOSIS is 4-10 years after onset due to the damage the excess cortisol does esp to the heart. Educate yourself before you make cruel and insensitive comments that distract from the intended purpose of the reporting! Please! Jesus Christ! There is also NO one diagnostic test for this disease, and is GROSSLY underdiagnosed. Sadly, and very clearly, most people *ahem* don’t possess empathy for others. Not until they themselves have experienced the same pain - which is the literal definition of lacking empathy, a classic trait of sociopaths and malignant narcissists. Stats say about 15% of the population are sociopaths. I believe it, 100%
I have that lump in the back of my shoulder blades B/P, stopped sugar, lowered salt etc, I'd like a Dr. To test for Cushing's.. What's up with Dr. s ?? I really don't know if they care😢.
Same thing happened to me when taking the steroid Dexamethasone to treat prostate cancer bone metastasis. It's taken months to get rid of it as I've had to slowly wean myself off of the steroid 1 milligram every week.
It could cause the syndrome, but not the disease. The disease is a tumor that causes the body to create corticosteroids, and is unrelated to external corticosteroid use. The syndrome can be caused by corticosteroids, but you'd have to use an awful lot of cream. It's much more common with the more potent oral corticosteroids like dexamethasone and prednisone
My mom has this. I think it must be caused by something different then a tumor tho idk she doesn’t like to discuss her medical stuff with me she doesn’t want to worry me. She literally doesn’t eat hardly anything is is 50 pounds over weight. She also was on chemo for sometime not because of cancer but because of her autoimmune disease. I think that’s what caused her cushings. It’s always been frustrating for her because people wouldn’t believe her when she’d say she was malnourished and couldn’t keep food down because of how heavy the cushings made her.
@@SaunterVaguelyDown No it was for the autoimmune disease. The medication she was on for it can often cause cancer so they always have patients also on chemotherapy while they go through the treatment. This was like 15 or more years ago too so they may not even have the treatment they had my mom on anymore. It was done at the Cleveland Clinic and it was an experimental treatment from my understanding because of how rare her disease is. The tumors are not cancerous they’re cause by her autoimmune disease
