Originally Posted by bluesfan

Hi Mat

Thanks for sharing your experience with Gabapentin (in your reply to summerfun). I've decided not to take it but need to find the clinical evidence to convince the doctors of why I shouldn't take it. Lot's of lateral thinking and research on my part and I now hopefully I may have enough to reason it out with them. (The more I research the more I realize what the doctors I see don't know ).

Your letter to the neuro was a good idea - I was pretty much dismissed by the neuro dept after one appt. (basically - 'Yes you have neuropathy but we don't know what's causing it - probably your autoimmune condition'). Given that the only offered treatment was (you guessed it) Gabapentin there's not much reason to go back. I've found letters to my endocrinologist to be very useful especially if I want to explain something I find difficult to verbalize or if I want to present a convincing case for trying something different. Also I do have to maintain an ongoing relationship with the department and letters provide a documented record that is often lost in verbal communications.

Re your difficulty describing the bone pain - the McGill Pain Questionnaire may help (there are short & long versions) - a search for it should bring one up straight away. Concerning the worsening pain - I'm currently researching the connections between degenerative disease, nutritional deficiency and pain. Sorry I don't have full answers yet but there appear to be connections between auto-immune induced metabolic imbalances and the resulting deficiency or excess in availability of nutrients used by the body, not only to prevent degeneration but also to ameliorate pain. This may not be something you want to look into at this stage but just ask if there's any topic I can keep an eye out for in my reading that might help you. (Do remind me as my short term memory problems mean it may slip my mind.)

One thing that's helped me is to look closely at previous blood test results and to investigate those that may be repeatedly borderline, then to research the connections to associated conditions, medications or influences that this may have. Hard to explain that in context of your condition but I have found that autoimmune conditions tend to throw up all sorts of anomalous symptoms and co-conditions that often are masked or attributed incorrectly to the primary disorder.

One final thing; Am I correct in remembering that a burning mouth was one of your symptoms? If so this article might interest you: (if not ignore this)

Burning mouth syndrome

Warning it's quite long but could help explain what/why you have that symptom. There is a possible connection with Sjogren's mentioned in the paragraph "Clinical Presentations".

Originally Posted by MAT52

Thanks Bluesfan - I admit I lack the strength of will to do good eliminations although I was gluten free for five years but going g back on gluten has made no significant difference to me. I will read your link on BMS later - although I've already researched this because one of my sisters suffers badly from it too. They offered her the lip biopsy but she decided against because she deaf and needs her mouth to lip read. And more to the point, if they won't treat Sjogrens with anything more than Gaberpentin etc then really what is the point?