Throughout many years, all of my doctors noticed and mentioned symptoms which turned out to be SS. My dentist, eye doc, dermatologist, etc. I think that ALL physicians that may deal with patients who may have SS should be educated in medical school about the type of symptom(s) that may show up in their practice may have that points to SS. For example: Dentist should be trained to automatically mention that such a dry mouth may be more than "just a dry mouth." Eye Doctors should be trained to know that such dry eyes can be a symptom of something else going on inside the patients body and advise the patient to see their family doctor about dry this and dry that! If the first doctors that we went to were able to put the 1+1 together, it wouldn't take so many years before the diagnosis is determined.
Hi confused,
I could not agree with you more! I don't think one single person here would disagree! I'll go further on to say that these specialists should have enough pride in their profession to make themselves familiar with the diseases they will encounter. It really is NOT that much to ask of them!
When I help find our members possible Doctors, I always google 'Sjogren's Specialist', and suggest that they confirm this when making the first appointment!
I have to go to an eye specialist to be cleared for Plaquenil, my GP gave me some possibilities, but I'll be certain to ask and if necessary WAIT for a call back telling me that this Physician IS familiar with Sjogren's and Plaquenil. Oh, we live and learn, don't we, and we learn to stand up and speak up!
Wishing you well, confused! Thanks for posting!
SK
Yep! My eye doctor kept on noticing that my eyes were unusually dry. And when I told him I had lupus, but it was in remission, he insisted that I could still have dry eyes from that. Then I told him that I was always thirsty, but it didn't ring any bells. Actually, I had mentioned the dry eyes and thirst to practically all my doctors. AND I mentioned it to the dentists that messed up (believe me, it was a mess up, but the story is looooong). When I developed TN, none of them could figure it out and kept on insisting that I had a bad tooth and pulled it! They pulled a good tooth! I kept on telling all the dentists that I went to that I had such an unusual problem with dry mouth, then I had this dental error occur, that led to crazy crazy pain, and all they would say is that I had a bad tooth, even though xrays showed my tooth was fine. Sooo....I had the tooth pulled thinking that they knew what they were doing. I went to a oral surgeon, who was also an MD at the end. He did not recognize the SS, but recognized that there was something screwy going on and told me I needed to see neurosurgeon and no more dentists! (He actually apologized for the profession! It was enlightening!). Then I went to my rheumatologist. I think he suspected. He took a ton of bloodwork. It came back that I had SS. That was a wonderful thing in a way, because I got my dx early. However, this same doctor, told me that SS was nothing more than a Pain ITA. And that I shouldn't worry about it. HE NEVER TALKS ABOUT IT. Anyway, none of my doctors seem to know a thing about it...other than the dry eyes and mouth. NONE! And I have many very smart doctors. I haven't received a ton of help from the SJS Foundation, but I do appreciate that they have mentioned in their literature that more work needs to be done to education physicians on this illness. I did speak to my allergist about this and she simply nodded her head in agreement....she doesn't seem to have any objections to the notion. However, I personally think my rheumy and many of my other docs would vehemently object to any re-education as they are firmly set with the idea that this is a dry eye/mouth thing and little more. I think re-education should start with the dentists and eye doctors, followed by the family doctors. Rheumatologists should be getting this training in school...big time...or maybe that would be too much of a Pain in their A!
I agree 100% with all you are saying. If drs. Were edecated in putting symptoms together it would be most helpful in getting a diagnosis. I have also had multible drs. hearing multiple symptoms and not be able to think outside their box it infuriates me. Most people that I know pretty much have to be their own diagnostition. It is pitifull. Don’t they get paid on he big bucks to know this stuff? Just saying!
Couldn't agree more! I only heard about SS in December when my ENT's PA told me I should be tested for it because of the dry mouth, eyes, etc. I was there being treated for a respiratory infection. Never in my life heard of this ailment before. I pretty much asked my primary to include this in my annual blood work. Now he acts like the hero cause he diagnosed me.
I so agree about educating the doctor while they are in school and making some requirement for doctors practicing to update their skills to included our autoimmune diseases and symptoms! If we can find the information so can they! Michelle
Thank you for posting this topic.
As many of us, I have *suffered* from this for years and only was diagnosed by a retired
rheumatologist at a free clinic after exhausting every conceivable consult I could arrange.
I started out maybe 8 years ago no longer being able to donate blood. They couldn't get it out of me.
Ended up spitting teeth out in my hand, etc. and probably still would be called psychosomatic,
were it not for this angel. Great topic.
It would save alot of distress for alot of people. I had been tested for diabetes since i was a child as i was so thirsty. Two years before diagnosis i felt so poorly that i begged my gp to do more tests and would he consider testing for sjogrens. I was still told it was depression. I agreed to see a psychiatrist to be assessed for depression. He contacted my gp and confirmed i was physically ill and no depression at all. I was still told would i not prefer that i had an infection than an AI. that they are rare.
Luckily after 2 years of fighting my doctor went on long sick leave for 6 weeks and another gp agreed to see me. It took her less than a minute to say she suspected sjogrens and would refer me to a rheumy.
I’m in the UK and would love to be able to change the training of doctors . My mother has ra and my daughter has type 1 diabetes and still he wouldn’t consider that mine was anything else other than depression.
Haha I did eventually end up with depression as well as sjogrens. The fight for a diagnosis wore me down .
Great topic now the fight has begun with my rheumy to educate him that a dry mouth and eyes are one of the smaller problems that i suffer with sjogrens and that there is alot more to it.
Take care x
Oh Mirrie,
I don't envy you this job! I have little patience or tolerance that we are just bored, spoiled women with mental problems! And you know, it would be no wonder if we aren't depressed or despondent, at least angry and aggressive! Oh, and lets not forget the label of being drug seekers! This always winds me up, can you tell?
Wish I wasn't so far away, I'd go with you! ha! Look out!
Wishing you well,
SK
I agree with everyone. I have been completely made to feel like a hypochondriac over the last 5 years and I am so tired of explaining that I don't want antidepressants at this time and that I actually have a very good life if only I wasn't sick all the time. Most of my doctors ignore me when I try to tell them how Sjogrens affects so many systems of the body. I have become completely disillusioned with modern medicine. They have done nothing to help me and only by me taking my health into my own hands by researching autoimmune diseases online and then changing my diet to the Autoimmune Protocol have I gotten better and been able to finally function again. It makes me sick and scared knowing that if something else with my health changes that there may be no other help out there for me. I am also worried for my children and pray they don't develop autoimmune diseases too!
Haha, I couldn’t understand why every gp I saw kept telling me they couldn’t help me and rushing me out of the consulting room.
A friend had to explain to me that i’d probably been labeled a drug seeker. I was horrified!
Haha I would love you to be with me in my fight. I am still new to learning about sjogrens but learn more each time i come here to Bens friends x
I worked with LE for over a decade. I worked with victims and secondary victims of Domestic Violence. I had to learn things that some people certainly wouldn't even understand what it has to do with DV. But, the one thing that I did learn is that I was able to be more proactive ONLY because I took my career seriously. Each doctor wouldn't have to be educated that much at all. Dentist only need to know that an unusually dry mouth "may" mean SS. My eye doctor would only have to be educated that excessive dry eyes are a symptom of SS, etc. That is very little to remember. None of them should have to even learn anything else about SS. It's kinda weird b/c when I was a child, if I was going to the doctor, I knew that the doctor would know what was wrong....even if it meant sending me to another doctor to look further into it.
SK said:
Oh Mirrie,
I don't envy you this job! I have little patience or tolerance that we are just bored, spoiled women with mental problems! And you know, it would be no wonder if we aren't depressed or despondent, at least angry and aggressive! Oh, and lets not forget the label of being drug seekers! This always winds me up, can you tell?
Wish I wasn't so far away, I'd go with you! ha! Look out!
Wishing you well,
SK
I always look at my Rheumy liker he has a 3rd eyeball when he asks me why I'm feeling unhappy. This is the same Rheumy that I've been seeing for 2 years for Fibro! Now, tell me that's not crazy! I was diagnosed by a Physicians Assistant. It was the 1st time she ever met me. She could tell just by the way my mouth moved as I talked. My lips used to stick to my teeth. So now I have to find a new Rheumy that's a little wiser.
It’s sad that so many people struggle to get a diagnosis and even after diagnosis struggle to get the help they need.
It was a nurse that told me about sjogrens and encouraged me to keep fighting to get my gp to listen.
I saw a stand in rheumy last time and a few weeks later i received my next appointment in the post which is for ten months after i was last seen. He also wrote to my gp to say i am on hydroxychloroquine, when actually during my visit he had told me that i’d had an allergic reaction to it.
I’m sorry it sounds like i’m moaning but actually i think i’m still shocked by the lack of care. I didn’t bother trying to get my appointment brought forward as he just looks at me and asks me why i’m looking so depressed.
I may look into changing but because of cut backs in the nos he is the only rheumy in my area now.
Take care x
Sorry i meant cut backs in the nhs !
I agree totally. For several years I was in the doctor’s office frequently with various problems, but none of them seemed to be connected. It took a nurse practitioner who saw me one day to ever get the ball rolling. He immediately ordered blood tests for autoimmune disease, and the diagnosis was Sjogren’s. This delay in diagnosis happened despite the fact that my mother had lupus and passed away with complications of Scleroderma. I was sent to a rheumatologist who essentially told me that yes, I had Sjogrens’s, and that meant I had dry eyes and dry mouth. She then asked whether depression ran in my family and tried to put me on medication for depression. I was having severe gastro problems at the time and she even wrote in my records that she “tried to explain to me that my gastro problems had nothing to do with Sjogren’s”. I took it upon myself to educate myself about the disease and gave her information I had gotten from several medicals centers, but she just ignored it. I eventually found another rheumy and am getting proper treatment. But each time I go to another specialist for eyes, teeth, stomach, etc., I have it all to do over again. What frustrates me the most at this point is that the term Sjogren’s is out there in the medical community, but many doctors still see it as only dry eyes and mouth.
How do good Rheumys treat an SS patient during their first visit? PLEASE tell me if it's important to have a CT scan? I was told by one doctor that if my blood test came back as normal, more than likely I don't even have SS. My Rheumy of 2 years didn't even pick up on it?????????????????? When I went back to him, he looked in my mouth for about 2 seconds. He then said "Take this medicine. If it works then you probably have SS. The med. did help a lot with my extremely dry mouth...not to mention chocking also. I've been told by other people with SS, that the doctor should've done a lot more. What is the proper treatment that a potential SS patient should be given by a good Rheumy? I am so FRUSTRATED!!! Please help me.
Thanks,
Confused
I would think one should only have a CT scan if there is an indication that you need one. What part of the body did he want scanned? My rheumie was very good when he treated me for Lupus, but lacking when it comes to SS. Just told me it was a “pain,” and wanted me to come in about every other month. Was more concerned with my bone density. I’ve gotten a lot of help from other patients.
The truth is, they are educated in these areas. But they aren't necessarily prepared to take ownership of the findings or their thoughts on it. It's only when you ask questions or raise concerns they might follow up, investigate, or take an interest. Particularly GP's dont want complicated cases, it makes their life harder in an already overworked, stressful day. And, there is an old saying in meficine which goes.... If you hear hoofbeats behind the barn, think of horses not zebras. Meaning, their training teaches them to think of the most common first, before considering the exotic. Sometimes a dry mouth is just a dry mouth.
Asking the medical professionals that you encounter over the years to put the pieces together is like asking for a miracle. It takes years of constant doctor visits countless tests and too many symptoms to count to finally get a diagnosis. Even after that you still have to be your own advocate to get the proper treatment. They simply don’t get it and I don’t understand why they can’t learn as much as their patients about theses diseases. Just be relentless and don’t always believe what they tell you. I know it sounds crazy but that’s how to keep yourself sain. Educate yourself and if your doc. Is worth a …! He’ll listen and you could teach him something.