I finally asked my kind, new GP today if he had other Sjogren's patients.
He thought a moment and said, "No, you're the only one. I find your case interesting since you have no bloodwork to support it, and yet you have every hallmark symptom to a fairly severe degree." He said he knew of a colleague's wife who was diagnosed from bloodwork and all she did was use an eye drop daily. Nothing else bothers her much.
He told me he'd never seen anyone else with such debilitating symptoms that seemed to come on so quickly. I said, yep, that's me...gotta be different! ;)
This was my followup after trying Plaquenil since the end of April. He was glad to hear my positive reports of less fatigue, joint pain and small increase in saliva. He wrote a new script. Now he wants me to have a bone density scan; lots of osteoporosis in my family, I'm 55, etc... oh, joy. Going for that next week. Let's hope for the best.
Take care, my friends.
Melinda
Hello Melinda,
This might be more common than many think. When I was dx my gp had never heard of Sjogrens. I was in the hospital and since I was on the hospital board and did the accounting work for my gp and the other 2 doctors in town they all came by to see me. Turns out that one of them had at least heard but none of them knew anything about Sjogrens. Over the years more areas of the body are being affected so I finally have a Rheum that I like and has a very good understanding of Sjogrens. This and Fibro are her two areas of specialty.
Take care and we all hope for the best.
Roger B
Roger,
This does seem to be common. I feel blessed to have found this guy. He listens, he's willing to learn more, he's caring.
This was the doc I was sent to for my SS Disability exam last fall. After 2 years of me trying to find out what was WRONG with me, and my GP at the time insisting I couldn't have Sjs, and the rheumy saying "only fibromyalgia and some arthritis", I go to this guy and in the first 5 minutes he asked me "So, why in the world are you not being treated for Sjogren's?" I nearly fell off the exam table! I changed doctors the same day. ;)
I'm glad you have a Rheumy who is knowledgeable and you like. I've heard that over the years at least there are ones out there "who get it." Good doctors are a joy to find.
Meld,
You are right; it was a blessing to find your gp! Listening, caring, and being willing to learn more about Sjogrens mean more than a hundred specialty degrees! Hang on to this doctor. :)
Cheryl
Wow Meld, I'm so glad that you've got a wonderful GP; lucky you! :D
Patze
It's very interesting isn't it? In the UK there are a similar number of people with epilepsy as there are with Sjogren's, yet most doctors don't know much about it. Having said that, the senior GP at our practice did suspect it a few years before the rheumy diagnosed it, but put it on the back burner when my bloods were okay.
I've been seeing a colo-rectal doctor/uro-gyny and gastro doctor for a year or two. Unbelievably, they all know a little about Sjogren's. However, when I've been an inpatient, I've always had to educate the nursing staff. Thankfully, they have generally been eager to learn, so I guess I've done my part in their education :)
Kathyx
Yes, I'm lucky to have accidentally found this GP; I sort of look at it like one of those "divine interventions". ;) He's in another town I hardly ever go to, and would have never thought of looking there.
Cheryl, right! Listening, caring and willing to learn means more to me than any credentials or letters behind his name. I won't let him go!
Rather ironic that on my second visit he saw that I worked for US Immigration and Citizenship; he was waiting for his Visa extension to be approved and was very worried. He's Guatemalan. I told him I didn't have any authority on approvals and I'm thinking that would be my luck. I find a wonderful doctor and his visa expires and he has to leave the US. :'( :P (He finally got his approval and will be here for a long while)
Kathy, Isn't that interesting that epilepsy patients and Sjogren's patients both need to know more. I'm sure you've done a good job with the hospital nursing staff and given them more training and education.
Take care, all.
Melinda