Undiagnosed with neurological symptoms and multiple misdiagnoses...About a year ago, I started randomly slurring my speech for about 5 minutes at reactions5repliesSymptomsDiagnosis
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a...reactions2replies
FATTY LIVER CANCER...MY CANCER WAS MISSED ON MY XRAYS 1 1/2 YEARS AGO AND NOW...reactions3repliesHealthcare Team
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every...reactions2repliesTreatment
Dont know...My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with...reactions2repliesCaregiving
Coping...I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised...reactions2repliesNewly DiagnosedCoping
Dystonia, epilepsy or something else?...Am now waiting on a more detailed MRI of lower brain and brain stem and reactions1reply
Where do you find support?...Who supports you in a meaningful way? What does their support look like?...reactions37repliesCopingFriends & Family
Wisdom Teeth Removal...I am a nervous mum for the first time events!!...reactionsrepliesSurgeryTips & Advice
Bones in head constantly keep feeling like they swelling....A bone appears and dissapears at back of head and the left side also has swelling...reactions2replies
45 years diagnosed Scleroderma...Because outwardly I appear to be fine most people just f fr o not understand how...reactions5replies
my life with Polymyositis...I needed a cushion or two to rise from a chair, needed bars and a...reactions7repliesDiagnosis
Possible Cervical Myelopathy...7 months ago I suffered an acute injury causing a herniation at L5-S1 giving...reactions1replyDiagnosisSurgeryTreatment
Dietary Changes...Today is the first day since my diagnosis a month ago that I have just felt...reactions11repliesCopingDiet & NutritionNewly Diagnosed
Leg movement...No one has a clue what's going on. Any help is greatly appreciated....reactions8repliesDiagnosisTips & AdviceTreatment
Hope for Cushing’s Disease...I went into remission and ended up now with SAI. I take 10 mg reactions2repliesAwareness
what are some tips for managing rar disease?...Follow the Treatment Plan: Management of a rare disease often requires following a specialized treatment plan....reactionsrepliesDiagnosis
Unknown Health conditions that is so discormforting...Hi, everyone I woke up one morning to notice that I have a burning sensation reactions8repliesDepressionSymptomsTreatment
Looking for fellow giants...Hoping to get a better understanding of Acromegaly and find others with the condition.....reactions2repliesAwarenessCopingDiagnosis
UNDIAGNOSED RELAPSING NEUROMUSCULAR / NEUROLOGICAL DISORDER – SEEKING ADDITIONAL OPINIONS...Over the last 6–8 weeks she has experienced a significant relapse and has deteriorated close reactions1replySymptoms
