Active 2 days agoUndiagnosed still but something is wrong Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...Reactions 0 reactions Comments1 repliesCopingDepressionDiagnosis
Active 2 days agoI am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...Reactions 0 reactions Comments1 repliesCostCopingDiagnosis
Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments10 repliesNewly DiagnosedSymptomsDiagnosis
Patient with strange symptomsI have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms
Ehlers Danlos and Epydermilosis Bulosis I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
What do you guys think this is I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...Reactions 0 reactions Comments1 repliesDiagnosisTips & Advice
Living With Adult-onset Still's Disease?Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...Reactions 0 reactions Comments0 repliesCopingDiagnosis
Numbness in fingertips, sensations in feet and head all depends on what I eat.Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant sensations in my feet, I get sores...Reactions 0 reactions Comments2 repliesDiagnosis
Doctor just said I have some random virus but am wondering if it is true or not.So i went to the doctor today and they said I just have some random virus but do not know if it is true. symptoms: Body aches, Fever 101-102.3 it...Reactions 0 reactions Comments1 repliesHealthcare TeamSymptomsDiagnosis
what are some tips for managing rar disease?Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...Reactions 0 reactions Comments0 repliesDiagnosis