I'm finding the discussions here so useful and I thought I'd try to incorporate what I've learned from you all into a care plan for my future. It sounds a bit grand, I know! I'd like to be proactive and positive, and maybe try to ensure that discussions with doctors are about quality of life as well as symptoms and problems.
I've had symptoms for years, mainly neurological, and I got the SjS diagnosis just a few months ago. I'm on lots of pain meds, Prednisolone, Plaquenil and Cellcept so I'm dealing with drug side effects as well as SjS symptoms, and mobility issues.
I saw my GP this morning to discuss a care plan and her response was that she'd support me in anything I felt I needed; I just have to work out what that is. I'm seeing the rheumatologist next week so I'll ask him too. In the meantime I thought I'd come to the experts - you all!
If you could design an ideal care package for yourself what would it include? Who would you see for eye care, for example? Your regular optician or the eye hospital? Ditto teeth and mouth care. How would you get the best care for long-term steroid use? Who is the best person to monitor your lymph system? How much time and energy would you spend consulting SjS specialists, maybe travelling a long distance for a consultation? Or would you rely on local expertise?
I know I'm lucky to have a supportive GP who is interested in learning more about SjS. I also know I'm blessed to live in a wealthy country (despite the current economic mess!) with the NHS so within reason I can request treatment and support - although I need to be prepared to wait for everything!
So if you have the time and energy to dream, please let me know what support and care you'd ask for.
Thanks to all - Chana xxx
Hi Chana :)
I'd like to be a better self advocate. It's weird - I have a 'degree in bullsh*t' when it comes to advocating for others but I'm hopeless when it comes to me!
My GPs fine. I'd like a rheumatologist who looked at the bigger picture. Mine tends not to. I'd certainly like a different neurologist. I still haven't done anything about the one I saw but I think I'm going to write him an icily polite scathing letter but run it past my GP first.
I prefer my opthamologist to my optician - and it means my GP gets letters. I'll stick with my dentist cos my teeth aren't worth saving!
Thankfully I've never needed steroids as yet apart from steroid eye-drops. (A course)
I just wish more doctors knew more about SjS than they do.
Take care - Scottie :)
Good question.My plan and hope is to be more proactive in my health this yr.I have a great GP and he tries to help me as best he can.My Rheumy is outright horrible and my nursing friends and family have told me to stop procrastinating and get a new one.My eye Dr. is good, same with dentist.I have alot of confusion on the best Specialist for Sjogren's.Rheumatology,Neurology,Internist,Endochronologist,and more.I just want someone who will manage my care and help me know what I need to do to help myself.Trust is at the top of my list too.
I think the best specialist is the one most familiar with how the most severe symptoms present...a rheumy for joint pain; neuro for brain fog, neuropathy, etc; GI for stomach and bowel upsets; and so on. Trouble is, since we all seem to hit all of those places, my solution is a good GP who is my liaison with the specialists. Luckily, our system is set up so that any tests or consults ordered by one doctor are in the system for the others to access, so (although I do) there's no need for me to drag reports from one to the next, or tell one doc what another has suggested or done.
I seem to have a pretty good set up right now...my optho is also the head of the opthomalogy surgical suite, so I have a private doctor and the eye hospital. My rheumy is a caring and thourough man who is in practice via a hospital clinic, so none of the politics of private practice. All my other docs maintain private practice in conjunction with hospital clinics, so I can access them either way. The only one "out of the loop" so to speak, is my dentist, as dental care in Canada is outside the scope of our national /provincial health care; but my dentist is affordable, accessable, and I have private dental health insurance that covers him!
My steroid use has recently become permanent...my rheumy tells me that since no matter what we've tried, my symptoms and lab work simply don't want to cooperate and allow further weaning, so I'm apparently on maintenance for life, but he conferred with my endo and they are both monitoring and advising.
I would ask for more education of health care workers about all Autoimmune disease, and the vague, lesser known ones like SjS in particular. I haven't run into it personally, but it must be devastating to ask a doctor about a specific disease and get a blank stare in response!