Hi En Bloc,

Thanks so much for your reply. I have read through many of your posts and feel you are far more knowledgeable on the Sjogrens topic than any Doctor I have met as yet, so was hoping you would reply.

I have made a private appointment with a specialist Sjogrens rheumatologist for next week and I am going to beg for the lip biopsy. My GP who I visited again this week stated that I wouldn’t be treated any differently if I was diagnosed as it’s just a symptomatically treated disease, just the answer you want went not feeling top dollar.

I guess at the moment the two main neurological symptoms for me are the constant numbness in upper mouth/face, the lack of normal feeling in other places, so more sensory. However I do think I possibly suffer for gastro issues in terms of a weird constipation, it’s not overly painful it just feels like its stuck a lot of the time & I am pretty much always full, no matter how little I eat.

When I was going through what I would probably class as a bad flare over Christmas/January, I did have a lot more of the autonomic symptoms, including the dizziness upon standing, struggling to deal with the very cold temperatures, increase in frequency of weeing – but it was mainly the sexual dysfunction & dryness that led me to the autonomic symptom route. I guess it would be very unlikely that it would permanently damage one part of my ANS and the others return to near normal when the flare is over?

The lack of understanding of Sjogrens in this day and age and the lack of drive for specialists to thing outside of their very rigid box really does annoy. I also find it ironic that I spent around 3 months back and for the doctors with severe dryness issues and sensory issues and did not do any of my own research – yet the moment I arm myself with information they get annoyed and tell you what you have read is incorrect. If this anything more annoying that being unwell – it is having to pretend to not have a clue what’s going on to massage an ignorant person’s ego. Sorry – rant over, this process is turning me into not the best version of myself – it will change, I hope :0.

Thanks,

Kirsty