Hi everyone just wondering if there are any Australian followers from Sydney. Would be nice to be able to know someone that i can share things with and get advice on local doctors.
Hi Brenda, Ruth (aka Tog) from Taree here. I'm ex Sydney, I drive down for some appointments, mostly at RNSH. But also have Docs in Newcastle. At least we are in the same time zone, country and state!
Hi it is good to meet an Aussie that can understand what i am going through. How long have u had sjogrens and what r your symptoms. And if you are on meds what ones and do they help?
Hi again Brenda, Hi Kaz, good to meet you! Sorry about not replying sooner, work and tiredness getting in the way. Kaz seems to have tabs on more than I do, I'm in a bit of twilight zone right now in regards to clinics and doctors having not long moved up to the mid north coast and my SS being missed due to having Q-Fever (what triggered my SS), which was mistaken initially for Lymphoma (which it isn't)....argh... so very long story short, I'm currently responding well to Prednisolone and awaiting review with the aim of going onto plaquenil etc. via a specialist in Newcastle. I can suggest to you where not to go - RNSH or Concord Clinics. (Ah the joys of being a public patient). I don't have nor can afford an optho, dentist or neurologist. I have CNS signs of SS
Hi Kaz and Tog, its great to hear from you both. I see a rheumatologist in the Mater at St Leonards. He also practices at Dee Why, he is the first Dr i have seen in Sydney. If u r having finance issues always talk to your specialist as most of them are more than happy to bulk bill your appointments if u ask for financial leniency. As most of them are in their profession to help people not just for the money. When you go to your GP ask if they know of any specialist that will bulk bill and they should have an idea as most local Drs know each other or have heard about others. I lived in Cessnock when i was diagnosed. I used to go to Maitland to see my specialist I cant remember their name as it has been about 14 years now since I was diagnosed. I also have been to the Westmead clinic about 5 years ago when I was living in Pennant Hills I found that they were informative. But since moving to the northern beaches I have had another two children (4 in total) and have not found the time to get back on track with trying to help myself. Funny enough I have not really been impacted by the fatigue and pain till after I had my fourth child who is now 18 months. Now my symptoms are getting worse faster and the flares are more frequent and last longer.
Bulk billing, what a great idea! You've heard of frequent flyers? I need a 'frequent crier' discount or points! ha!
Hi kaz, just a quick question did u get diagnosed with MS first or sjogrens? As I have read that people with sjogrens can be miss diagnosed with MS as it can be mistaken for other sjogrens related diseases. I will have to find where i read it so I can pass on th right info about it so u can read it and see if it relates to you. As there are so many different things that go along with sjogrens that make it hard for us as patients to get the wright answers and diagnoses’, and treatment as some treatments that r good for sjogrens make the MS symptoms worse.
Hi Kaz, I would like to ask you some questions via private messaging/chat the next time we are online here if it's okay with you?