Hi--
I've been experiencing autoimmune symptoms for over a year now. The Sjogren's are finally floating to the top. From everything I research and read, I'm convinced that SJS is the proper diagnosis. Unfortunately, my rheumatologist (who is the only one I've ever had) will not consider a diagnosis without any blood work to back him up. We had a very nonproductive visit today. I had a high ANA and IgG. Otherwise my SSA, SSB, and RA have been normal. I'm a little frustrated and wondering if I'm just crazy. I'm considering asking my GP, who I adore, to find my a rheumy who specializes in Sjogren's. Is this something I should do? Could it be that even though I match 95% of the symptoms of SJS, including symptoms from anecdotal stories from members of this forum and others, this isn't what I have?
Thanks all. I really need some support tonight.
MB
If I had to start my 40 year journey all over again to get my diagnosis I would not have put up with doctors who don't listen and pushed me around. I have finally learned that I am the one who pays them. They work for me. So, I get to choose who I employ. You've got to find a good fit. If you are not able to voice your opinion and be heard I might start the search for a new one. Don't give up the old one until you find the one you want tho.
Its hard when you really like your doc, but not getting any answers or the help you/we need. You have to put yourself first. I love my doc, but
also have seen multiple other doctors too, and she encourages this as well. You can have more than one doc too....sometimes, it gets more
confusing, but at least it might give you some more options or possibly a different diagnoses?
gursie
Hi MB,
I'm not a medical person, so no one here can diagnose you, but I can say that many of us were diagnosed on symptoms alone.
Looking at my blood work, you'd say I am a 55-year-old woman in excellent health. Because of my blood tests, my rhuemy insisted I only have Fibro, and no Sjogren's. My primary doc said we need to wait a few years to see if it shows up... ??? That made absolutely no sense whatsoever to me.
I found a new GP who diagnosed me right away. He asked "Why are you NOT being treated for Sjogren's??"
I'm sorry to hear of your unproductive visit. I know what that's like; we can feel frustrated and defeated.
Just my personal opinion, I would encourage you to find someone else whenever you feel you're not being treated appropriately. As Jozee said, we need to do what is right for us and what will get us the help we need.
Keep us posted. We are here for you and understand.
Take care,
Melinda
The only positive test I had was a high ANA, and it wasn't even that high. All other tests were in normal ranges. Your doc should diagnose on symptoms rather than solely on blood tests. They are a piece of the puzzle but shouldn't be the be all end all. In my opinion, find a new doc.
Hi :)
If you can find a new doc, I think you probably should. Can you find out whether you could get recommendations for one - or one that specialises in Sjogren's?
If they won't diagnose - at least insist that they treat the symptoms you are suffering.
Good luck - take care - Scottie :)
A lot of us have no positive Dx of this disease. The decision to change Rheumy's is yours. I went through quite a few before I got a positive Dx.
In the mean time, please take care of yourself.
You guys rock. I can't tell you how much better you've made me feel. Sometimes I think I'm going crazy and this is all in my head. Then, I have a bad day, and the difference between my "old" life and my new one is so much clearer. Melinda--thanks for telling me that your GP diagnosed you. I love mine and I know if I educate her she would be willing to at least consider a diagnosis.
Thanks for giving me some hope and a little self esteem back--
MB
I'm so glad we could be of some help. We all need some validation of our feelings. All of us might have thought we were crazy at one time, or made to feel we are. :P
There is hope! Perhaps a talk with your GP might be of help; I hope so. It's really up to you if want to see if they know of a good rheumatologist or if they have ideas of how to help your symptoms.
Take care of yourself and know that we are all here for ya, rooting you on!
Melinda
I beleive I've read that only something like 50% of people with Sjogrens show up with a positive SSA or SSB?
I'm going to get a new Rhmy as well. As the last two I saw. I mentioned the dryness of the eyes, sinus, mouth and the fatigue, joint pain, etc. Then mentions Sjogrens syndrome. But both Rhmy's weren't intersted at all in talking about Sjogrens Syndrome.
Yes, the vast majority of doctors solely rely on positive bloodwork. My problem has been that doctors will only do an initial basic blood test. And since my basic blood tests come back normal, they refuse to look any further. I do have a negative SSA, SSB, and ANA.
This may sound harsh but I have "fired" my first 2 rheumys. I agree with the others - the choice is yours and yours alone and if you don't have confidence in the doctor and treatment plan, I feel it is just wasting time. I wasted a whole year with these 2 rheumys. One said I had Sjs, then the next visit it looked more like Lupus. By the third visit it was "just Fibro - here is some Cymbalta." The odd thing is I went there for my THROAT and SWALLOWING problems due to severely dry mouth. But they all focus on the allover pain, which is treated fine with meds. The Cymbalta made me shake, sweat and generally "lose it."
The second rheumy ran pages and pages of blood work. She said everything was fine. She said my probs were not rheumatological in nature. Uh-huh, sure. So I called and asked for a copy of the blood work. My clotting factors were all out of normal range, my RA Factor was double the normal range. Now, I am not a doctor but that struck me as wrong to tell me all the blood work was fine.
Long story short, keep looking until you find someone who truly listens, values your input (you know yourself better than anyone else does) and treats you in a way that actually helps - or is at least on the right track!!
Best of luck.
KellyG
Most doctors are still stuck in the stoneage. Alot of them won't treat or give a diagnosis unless your blood work shows up something. In my case, if your first blood panel comes back fine, then they won't do further blood tests. Even though there are tons of specific tests out there like SSA and SSB for Sjogrens that aren't done in a regular blood panel.
The other thing is you probably don't want to mention any anxiety or depression if you think you have that. As the docs tend to blame all your problems on a mental illness. Which I think that is the same as 100 years ago doctors saying you are ill because you have demons in you.
Another thing you need to know is that blood work can convert back and forth from negative to positive. I had negative blood work for years. I have been sick since the early 60's and just got diagnosed with sjogrens in 2003.
I was fortunate to find an Immunologist who treats me. I asked him one time how often he does the blood work and he said every year or year and half. He said we treat the patient and their symptoms---we don't treat blood work.
I finally did convert to positive SSA and SSB a few years ago but the last time it was done the SSA was normal. He said that just because your blood work goes back to normal doesn't mean that you are in remission. Like the others said, find someone who you can work with and who doesn't have his brain stuck in the stone ages. The latest and newest treatment for sjogrens is to start the patient on Plaquenil as soon as possible to halt the autoimmune attack on the body.
More and more people are coming on this site and telling us that they are, indeed, having Plaquenil started early. This was not the case when I first came to this site. Progress is very, very slow, but it is taking place. It is up to us Sjoggies to "kick butt" in order to keep things moving. Irish ;D
Quote from: irish on August 13, 2011, 07:24:21 PM
Another thing you need to know is that blood work can convert back and forth from negative to positive. I had negative blood work for years. I have been sick since the early 60's and just got diagnosed with sjogrens in 2003.
I was fortunate to find an Immunologist who treats me. I asked him one time how often he does the blood work and he said every year or year and half. He said we treat the patient and their symptoms---we don't treat blood work.
I finally did convert to positive SSA and SSB a few years ago but the last time it was done the SSA was normal. He said that just because your blood work goes back to normal doesn't mean that you are in remission. Like the others said, find someone who you can work with and who doesn't have his brain stuck in the stone ages. The latest and newest treatment for sjogrens is to start the patient on Plaquenil as soon as possible to halt the autoimmune attack on the body.
More and more people are coming on this site and telling us that they are, indeed, having Plaquenil started early. This was not the case when I first came to this site. Progress is very, very slow, but it is taking place. It is up to us Sjoggies to "kick butt" in order to keep things moving. Irish ;D
One problem is even if you have positive bloodwork. Some docs will say you don't have so and so even though it shows up positive.
What are all the tests for Sjogrens? I'm gonna look for a new Rhmy. Though, it does cost alot to have alot of one time appointments trying to find somone who is willing to do something.
Though one problem is I've been diagnosed with Lymes disease because of a positive C6 Peptide test. Though the western blot and ELISA were negative.
I would also like a new rheumatologist. Mine doesn't seem very knowledgable. I had been experiencing acid reflux and nausea for months. My doctor said never would Sjogrens cause that. Everything I have read contradicts him. The hard part, however, is getting a referral. Any suggestions??
Quote from: melissamrrll on August 15, 2011, 08:19:25 PM
I would also like a new rheumatologist. Mine doesn't seem very knowledgable. I had been experiencing acid reflux and nausea for months. My doctor said never would Sjogrens cause that. Everything I have read contradicts him. The hard part, however, is getting a referral. Any suggestions??
You'd probably just have to ask around for recommendations in your area. Or maybe you could call their office and ask if the doc is knowledgable in Sjogrens syndrome. After that it's just trial and error.
I'm still made at the two Rhmy's I had seen. I had told them about my eye test showing I have severe dry eyes, and about my ear nose throat doctors reporting that my sinuses are severely dry. And I mentioned about my dry mouth, joint paint, fatigue, etc. And then mentioned about Sjogrens. And both docs abruptly said I didn't have Sjogrens and wouldn't discuss Sjogrens any further. I should have asked them to explain how they believe I didn't have Sjogrens syndrome.
I guess my problem is that I'm fairly young and male. They probably would have been more open for discussion if I was an older female.