My bloodwork tests negative, too. For one thing, there is NO TEST that proves that someone does NOT have SS -- so that doctors irk me when they tell patients they don't have SS. There's no test to prove that!
Thanks GrumpyCat, glad to hear it!
Thank you--keeping a symptom diary is a fantastic idea!
Eprof…one of the added bonuses to a symptom diary is not just ways to keep the doc informed, it may give you insight as to what your triggers are. I am on Patients Like Me and I check in often just for that reason. I add notes about my activities, diet and even weather changes sometimes to keep an eye out for patterns. It helps.
Hi eprof,
I am so sorry you are going through
a difficult time and you feel so disappointed with the new rheumy.
I know how helpless one can feel when you are sick and know what's wrong with you, and docs brush you off.
When I first developed hashimotos, I went to all( a lot!) of these "great" recommended endocrinologists who put me on synthroid and Levoxyl and I still felt like crap (Sorry). I begged them to let my try Armour because my mom had been on it forever and synthroid doesn't work for her. They also didn't run a free
T3 test. I begged my GP to test me and let me try Armour; my T3 was epically out of whack and I needed cytomel...and she put me on the Armour. And the VERY next day I felt at least 50% better! I thank God for that GP.
Anyways....my point is to not give up and there are many avenues to get the care that you need, and eventually you will meet that sympathetic doc who will do all they can to help you.
Don't lose faith! You can do this!
And by the way to Ovisaries:
I’m in no way trying to disrespect you because we are all here for info and support, but here goes…
I strongly disagree with you when you say that the SS symptoms will get better when the 1st diagnosed autoimmune is under control. I feel that they are totally separate entities, especially in my case. I have had hashimotos for at least 10 years before the symptoms of SS started to rear it’s ugly head. I think a lot of people will think the same way.
Hi eprof,
Sorry to hear about everything you've dealt with. I wanted to let you know from personal experience that I would recommend to continue to taking Plaquenil. 2.5 years ago I was diagnosed with primary Sjogren's at age 30. The rheumatologist's office was hectic and I wasn't comfortable there even though she was a good doctor - or so her colleagues said. She was thorough but her office manager was stealing co-pays and files were piled floor to ceiling everywhere. It just seemed disorganized. Well, I went to UCLA for a second opinion and had a doc fresh out of college. He ran my labs which came back totally normal!! He said I was the healthiest person that had been in that office and that I was misdiagnosed. Well that was awesome! But I had been on Plaquenil for 3 months at that point. I had read in several medical journals that Plaquenil can make autoantibodies look normal. Even my ANA and rheumatoid factor were normal. I asked the doc about this and he said he had never heard of that and that wasn't possible. Idiot! Because you know what? I wasn't on meds for two years and I got soooo sick earlier this year because I had my first massive flare since then. I am now on Palquenil and have had to alter every aspect of my life. Don't get me wrong, because I am thriving and determined to continue to do so. But I have a burning mouth and nose and I can't eat much without it flaring my symptoms. I do think if I hadn't switched docs and had stayed on Palquenil, I would be in a better place than I am physically. So my point is that if you tested positive already - even though your numbers came back normal since changing docs - you've got Sjogren's. Hope this helps!
Casey
Woohoo! I’m an outlier!
Well said. I have found this to be true for me as well; when one autoimmune disease is under control, the others do their best to fall in line. I can’t expect to have good control over my secondary diagnoses when the first one won’t behave. The autoimmune world is simply frustrating. There are so many diagnoses with overlapping symptoms. While it must be fascinating to be a rheumatologist, they really need to be the cream of the crop in order to benefit the patients, and (unfortunately) many are not.
Gosh, I wish that was true for me. My acupuncturist got my Hasimotos under control, and I know have a normally working thyroid. But the SS keeps raging on without abating.
GrumpyCat said:
Woohoo! I'm an outlier!
Well said. I have found this to be true for me as well; when one autoimmune disease is under control, the others do their best to fall in line. I can't expect to have good control over my secondary diagnoses when the first one won't behave. The autoimmune world is simply frustrating. There are so many diagnoses with overlapping symptoms. While it must be fascinating to be a rheumatologist, they really need to be the cream of the crop in order to benefit the patients, and (unfortunately) many are not.
Wow, I didn't know that. I started developing Hashimotos in my 20's but didn't notice the symptoms of SS until I was about 50, I think. It has affected the exocrine Pancreas, too, so I have a lot of weight loss and need enzymes to digest food.
The Acu is kind of a young guy but knew how to heal thyroids. He admitted I was his first SS patient (he had a ton of Hashimotos patients, though, and ones with RA) so he is not yet familiar with what to do for that so I don't go to him anymore for it.
It really stinks that this happened to you, bottom line. It’s very frustrating, but very common for the new rheumatologist to decide on first glance that the old rheumatologist was wrong and remove treatment. I had a near brush with that myself with my current doc. I have had SEVERE plaque psoriasis, a nasty case of PsA, Raynauds and fibromyalgia. It took a long time to get my meds just right, and even then they weren’t giving me perfect control. He was great at running lots of tests and discussing the results, but because everything but my ANA and the gene for PsA was normal, he tried to decide that maybe I didn’t have these things. He had never seen me in a full flare, but my previous docs had. Anyway, I had to argue pretty hard for keeping my current treatment, such as it is. He DID listen, but I had to b very insistent. Maybe that is what you should try? If he doesn’t listen then, maybe it’s time to move on to a doc that will hear you.
My previous rheumy had also seen me in some flares, and then had seen me when I was doing well--so he knew the difference. It just drives me nuts to think that I have to get sick again in order for a new doctor to think I'm worth listening to. Grrrr. I have gone into my records at the clinic (we have a patient portal) and I've printed out all the visit summaries and the notes from my old rheumy. He took meticulous notes and wrote up good summaries about why he was choosing whatever treatment he was choosing. I've made an appointment with my GP, and I'm going to bring all of that to her, ask for a referral to a new rheumatologist, perhaps with a note about the current situation. Then I'm going to bring everything I've printed out to the new rheumy as well, and keep my fingers crossed that he/she will be open to at least acknowledging that I'm doing well now compared to just a few years ago, and why would anyone want to mess that up?!? Wish me luck! I am so sorry to learn of what everyone else struggles with as well. This syndrome is no fun, so I can't even imagine what everyone else who is also dealing with so many other disorders goes through. It sure does seem that autoimmune disorders cluster together--when there is one, there is almost certainly another. What a great day it will be when the research finally finds the key to explaining all of this.
Good luck, Eprof. It sounds like you have a good plan of tackling the problem. I agree with you -- we shouldn't have to get sick again for the new doctor to see it.
eprof said:
My previous rheumy had also seen me in some flares, and then had seen me when I was doing well--so he knew the difference. It just drives me nuts to think that I have to get sick again in order for a new doctor to think I'm worth listening to. Grrrr. I have gone into my records at the clinic (we have a patient portal) and I've printed out all the visit summaries and the notes from my old rheumy. He took meticulous notes and wrote up good summaries about why he was choosing whatever treatment he was choosing. I've made an appointment with my GP, and I'm going to bring all of that to her, ask for a referral to a new rheumatologist, perhaps with a note about the current situation. Then I'm going to bring everything I've printed out to the new rheumy as well, and keep my fingers crossed that he/she will be open to at least acknowledging that I'm doing well now compared to just a few years ago, and why would anyone want to mess that up?!? Wish me luck! I am so sorry to learn of what everyone else struggles with as well. This syndrome is no fun, so I can't even imagine what everyone else who is also dealing with so many other disorders goes through. It sure does seem that autoimmune disorders cluster together--when there is one, there is almost certainly another. What a great day it will be when the research finally finds the key to explaining all of this.
What I find most frustrating about this new rheumy's approach is that he has just essentially glossed over other aspects of my health--for example, my HLA-B27 test has been equivocal twice. That's a piece of the puzzle he's not even looking at when he throws the fibro diagnosis out.
You're my new favorite. LOL
Really, thanks for the info again. There is an awful lot flying around out there and narrowing it down is tough for lay-people, intelligent though we may be.
I cannot seem to get the Dr. to represcribethe arthritis rub I got once for ankle pain(which is really stiffness/numbness.) I used it on my very damaged neck muscles.
Many Doctors or PAs have just shrugged their shoulders when I tell them about any kind of symptom and act like they only made it through Jr Highschool, I my opinion And I have gone on self-diagnosing and treating.
*My salvary glands causing bad taste in my mouth for many years was diagnosed as GERD!!!
Was it Voltaren/Diclofenac gel? That’s available over the counter now in the states. It was already available in Canada over the counter for many years.