Found a fabulous specialist!

Monday I drove the 2 and half hours to see a specialist that had been recommended for me. I had to wait 6 months to get in to see him, but it's been worth the wait. The consultation took 2 hours, he was actually listening to what I had to tell him and he instigated a lot more investigations than anyone else has ever done, including repeating a lot of what had been tested for (haphazardly in the past). He does some of his own diagnistics in practice, so had ID skin testing and schirmers etc all done there at the time. No interruptions, he didn't leave me alone during any of this - following me from room to room and kept chatting about my history and symptoms.

He has in co-operation with other specialists developed a new technique for confirming Sjogrens instead of lip biopsy. It's a nucleotide scan which he has already organised for me next week with results available same day. From there I go to see his dietician specialist to give them my diet diary for this week and be given a customised elimination diet - to exclude any food allergies or intollerances from the equation. then in the afternoon I see him and get the results of this weeks tests (including many many serology/antibody tests) and the scans, to start a plan of action.

I am relieved that someone has finally listened to what I had to say, and gave me straight forward answers and a sense of moving forward with these confounded conditions.

I am exhausted though, and I had to leave work half way through the day yesterday with profound fatigue and weakness, the shakes are terrible and I am stumbling a lot (this flare has not settled down at all). Work is letting me start late today, and they have changed my schedule as of next week so I no longer have to do early starts, weekends or do overnight on-calls. Plus they are paying for a counsellor to help me talk about and cope with some of the psychological aspects of all of this. They've become very kind and understanding and I am grateful for that.

I'm hanging in there, still got some fight left in me yet.

Ps. the working theory at the moment is Sjogrens and Lupus with CNS involvement.

WOW, Tog..that is all such great news!!! I am so happy for you. You have had a real run of it lately but is sure sounds like your found your doc. Worthy of celebration! And I am pretty stunned that you have a job that is so understanding too. I really am thrilled to hear it. Again, these are the things that keep revives hope. Please continue to keep us posted on your journey. Thanks for sharing.

Hey Tog,

It's about time things are falling into place for you! I'm so glad you have found such a great Doctor, well worth the trip, I'd say! It's good to know that there are still Physicians out there who take such time and care with their patients, to me, these are the true healers.

I hope you get some vital questions answered, can't treat it until you diagnose it! I know they still suspect that I have SLE or MS besides the existing line up, but so far I'm clear on the brain MRIs.

I'm so glad your Hospital Administrators are being so caring, usually they are the least compassionate when it's their staff that falls ill, and struggles to keep up.

Take good care of yourself, we're here when you need to lean on someone, but glad to hear you have some fight left in you!

Keep kickin', girlfriend!

Wow Tog!
I am happy for you & shocked to here their exist such a practice! I wish you all the best!!!

Hi Tog

I am so glad you found this doctor. I also have lupus. Your work is wonderful the way they are working with you. Keep us posted on how it goes.