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Originally Posted by Healthgirl
I'm sorry if this was already discussed. Did you have a full autonomic work up?
Tilt table, halter monitor, sweat test? So many of your symptoms seem like autonomic dysfunction. If you have the sfn symptoms, it could very well be dysautonomia causing the organ malfunctions and disequilibrium. It can cause distortions in vision, dryness in secretions, vertigo, among a hundred other issues. I am also back and fourth between a borderline SJS diagnosis vs another random connective tissue/neurological disease. I have some doctors say they think its autoimmune SJS and some say no, it is the autonomic damage causing the SJS symptoms of dry eyes.
Do you have a history of autoimmunity in your family?
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Hi Healthgirl. No I've never had an autonomic work up. Not sure if they even do these where I am in Scotland. My SJS is now primary and definitive.
My family weren't a healthy lot although they tried by eating very well - and no history of autoimmunity that I'm aware of - but most died young from stuff like septicaemia, car crash, heart failure and hereditary, late-onset diabetes (type?) so I can't know this for sure now.
I'm fairly certain that my primary SJS and other autoimmunity were caused by my late mum starving me accidentally as a newborn. Her breast milk never came through properly because my grandmother told her not to feed me more often than 4 hourly. By the time a visiting nurse friend saw me I was a day off death from malnutrition, or so the reluctant story goes. Rather than telling any doctor, they took this nurse friend's advice and bulk fed me on semolina mixed with formula milk. I can only have been a month old at most. My Nan called me "Miss Semolina" but I only found out why once I'd prised this information out of my mum, who was so ashamed.
Consequently I was told and believed, until I was in my 40s, that my many facial rashes, GERD, intermittent constipation, sweats, fatigue and severe alopecia and chronic eczema were all a consequence of stress/ anxiety.
Lots of things have made sense to me recently but none of this is on my medical records... Yet!