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Chronically Ill: Travelling by myself to Mayo Clinic FL first time
Visiting Mayo Clinic | Last Active: Apr 30, 2019 | Replies (19)Comment receiving replies
I wonder how many times it takes a patient with a Chronic illness to get a accurate diagnosis? Medical schools need to screen applicants and train medical students to do better by their patients by listening patient's complaints and using their professional knowledge to form a plan of care : Mottled skin, a objective sign of disease and localized or systemic will determine what labs and diagnostic tools to use.
I have come away discouraged with the medical field and think genetic testing should be implemented sooner. I was satisfied with Mayo's Pharmogentics and the doctor that explained the Oneome test results which I did find out I have : Factor V Quebec and thru Ancestry.com I was 3% Eastern European Descent Ashkenazi Jew! and probably Quebec "Founders Effects" Rare disease list of Maladies, which I still suffer with untreated with Systemic Livedo Racemosa ( new Dx.) and Scarred Cornea both eyes to Stroma level and Fatty Liver which no doctor will treat any of these issues. I will add a 2013 hard Clavicle lump peach pit size on L. superior located clavicle distal third irregular of cortex that was Xrayed and correlation recommended ? But as usual no one ever followed up?
I am still ill with new symptoms popping up like the blurred vision which was scarred corneas and know I will never be diagnosed until my death. If I had it all over to do again I would of went to Rare Disease Program. Good luck to any new comers to Mayo. Mayo patients can help with emotional support but i would think Mayo would offer RN's or SW for medical advocacy for the chronic ill patient to work on coming to diagnosis and quality of life for the patient.
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Coordinated care in 2018 is more difficult; there seems to be less healthcare professional collegiality. Privacy regulations and legal action seem to limit our connections! I'm glad for these discussion groups! This week I'm trying to coordinate my primary care physician access with my two emergency department trips to the local hospital. Their patient portals won't talk to each other. I will make phone calls to each systems patient care coordinators. If necessary, I will order electronic copies of my two ED visits, print out copies for my primary physician and request that she look at the radiology reports very closely! Vigilant patient attention seems to increase my knowledge of my self and grow a huge paper pile! I do have at least one Rare Condition of which an ED physician advised me to seek more cardiology care. The Rare Disease with NIH.gov
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@canderson12 First of all thank you for your venting on rare diseases It is so frustrating to be going to Dr.s and not getting a diagnosis or treatment. In medical school all Dr.s are not taught prevention just treatment. We have to be our own advocate for our health and don't take no for answer . I am a retired nurse who is disalusioned with the Dr,s I also have studied holistic herbs ,homeopathic medicine for along time . here is a website that talks about rare diseases if you care to look at it. https://rarediseases.info.nih.gov