I have had an undiagnosed disease for nearly 26 years and it’s finally killing me. Painful glands, night sweats cognitive impairment and abdominal pain.
I am glad that someone has organized a system for helping the patients that fall through the cracks of our healthcare system. One thing to think about is helping all the chronically ill people who are home bound and therefore too ill to easily access outpatient medical care. Another thing to consider is all those folks with diseases that are not rare but seldom get diagnosed properly like CFS/ME. There is a great deal of patient illness reality that is still ignored by our healthcare system. In particular illnesses where there are few obvious signs that physicians can sense during examination and where common blood tests are normal are often deemed “not real” or “not serious” by most doctors - in essence completely discounting a patients observations about their own bodies. Today’s health care system assumes that there is no medical phenomenon that existing tests cannot detect or measure. That assumption is manifestly false.
I feel like most doctors could figure it out without prolonging diagnosis and traumatizing the patients by just listening. I mean…look at the entire body. What’s not working right? If your tests come back normal. Wait for them to be symptomatic.
I only just came across this video and have a feeling y'all probably aren't still reading the comments. But, in case y'all are, I have a mystery illness that seems impossible to diagnose. Beginning 1 1/2 years ago at the age of 67+ I began suffering symptoms that would increase in numbers, increasing and spreading pain, discoloration (to include black early on), asymmetrical swelling that ultimately didn't go away, extreme stabbing and grinding pains, sensation of stepping into ice water, and extreme tightness in my feet and toes. Both feet and all toes are affected, however my left foot, toes and leg from mid shin down is quite a bit more affected than the right. I do have significant back issues that have been cited by my doctors as probable contributing factors to some of my symptoms -- but not all -- due to nerve compression. All of my doctors have actually seen the many presentations of my feet, toes and legs. They each have witnessed some of the discolorations, swelling, tightness, temp changes, active changes in shape of my toes (left), and have been made aware of the extreme pain of the random stabbings in my feet, toes and legs. None of them have seen all of the manifestations since, although the swelling and discolorations are now constant, some symptoms are still random and not constant. The tests I have had and conditions ruled out are: Fasting lab work ruling out diabetes, etc. Echocardiogram, ultrasounds ruling out arterial and venous blood flow insufficiency. Nerve conduction tests. Ultrasounds of abdomen, kidneys. MRI's of brain, lumbar spine and thoracic spine. I have my primary doctor, orthopaedic doctors, pain management, vascular surgeon and a neurologist surgeon who will be going over my test results and reviewing a meningioma I have had for 11 years. My tests I have been told do not reveal a diagnosis. I could and would appreciate more than I can express any ideas/suggestions y'all may have. Please contact me via my email or Facebook with any information you feel could be beneficial in a diagnosis. This condition is worsening and so very debilitating and frightening. Thank you very much for your time in this matter.
I have an undiagnosed illness that is preventing me from work, school, and being a mother...all ADLS are affected. I've been severely sick over 4 years and docs have no idea what's wrong. How can I get into your program? I have a 4 year old son and he needs me and I am so sick all the time I dont want to be here on earth anymore and that scares me more than anything I need help
