I have been on the diagnosis treadmill for a while now and late 2017 finally met a Neurologist and an Immunologist that at least think i am genuine and are investigating me thoroughly.
However so far apart from a couple of 1:80 ANAs, my bloods are very normal. So is my salivary gland ultrasound and my Immuno thought there was no point doing a lip biopsy for Sjogrens. He suspects EDS.
EDS may be possible but i am definitely not flexible, dont have stretchy skin and dont meet criteria for the hyperflexible type as far as i can see! There is some family history that may suggest it though and my twin boys have hyperflexible hands. But my husband has more range ofmovement than me so the twins may get it from him!
I have very dry eyes and cant produce tears except for slight reflex moisture. Dry mouth, private areas, nose throat ears skin...list goes on. I have confirmed Lichen Sclerosus which is debatably autoimmune. I have odd autonomic symptoms involving hear rate blood pressure body temperature bowel etc. I have had numb patches randomly on left foot, reduced proprioception involving feet or legs, and prickling in hands n feet, crawling bug sensations esp scalp and phantom itches. Visual and smell oversemsitivities. list is endless.
My question is this...is EDS characterised by SUDDEN SEVERE FLARES involving weight loss muscle weakness joint pain shortness of breath fatigue muscle fatiguability skin rashes esp after sun exposure, sensitivity to sun causing increased symptoms...and by sudden and severe i mean a big significant change out of the blue for no reason??? Because if it is genetic i can understand having a baseline of symptoms that fluctuates and gradually worsens but my flares seem more aligned to aitoimmune flares than what i have read about EDS.
Any information is welcomed please. even better if you can link to research or evidence that i can take to my rheumy.
Thanks so much for listening!