Hi everyone, I'm on numerous forums but this was suggested to me as a good place to come!
I'm 38 and have been very unwell for about 4 years. Only this last 6 months after seeing endless consultants did I learn I have EDS hypermobility type and sero negative Sjogrens. Had A.S for a long time. I suffer terrible neuropathies from the sjogrens including full body small fibre neuropathy, autonomic neuropathy and more recently trigeminal neuralgias which have affected my swallow, my ability to chew, feel etc. It has been quite an awful journey and I have had to fight to get my diagnosis as no one would entertain possibility of sjogrens without positive bloods. It was only through the support of forums like these that I went and had the lip biopsy privately in the end. I was almost convinced out of my suspicions that I had sjogrens by most rheumatologists I encountered. In the end I listened to the forums and ignored the rheums, they were wrong in their insistence I did not have sjogrens.
I'm currently in the system trying to access co ordinated and well informed treatment. This has not been easy at all as there is no clear direction in this country on this it seems. I am on plaquenil which I doubt helps the neuropathies at all but I will persist.
I really look forward to getting involved in this group despite the fact my diagnosis is Sjogrens and not Lupus. Thanks for having me! 😁