...being new to this board, something struck me very quickly.
A large number of board users seem to be either connected to the medical profession in some way (LOTS of nurses!) or like me, working in education. What does this tell us?
Everyone without exception, no matter what the profession (or whether working or not) seems to be of above average intelligence (despite our forgetfulness!) Most of us also know how to search for information (and that requires access to a computer ideally), and how to sort through 'the jungle' of information 'out there'.
Thought...how many of us diagnosed OURSELVES initially (then went off to get tested)? The fact that so many members of the medical community are using this board makes me think that they may have actually met Sjogren's patients at some stage in their work, and then realised that they have similar symptoms. The rest of us used our intelligence to keep searching the internet for answers in the absence of anyone being able to solve the mystery of our ailments!
Frightening conclusion: How many poor souls are 'out there' suffering badly, but do not have the first clue how to go about searching for answers? This takes time, energy and access to information.
In some ways, we are the lucky ones to have been able to get this far!
I agree with everything you said, but you can take me out of the intelligence equitation :D What does this say about the average intelligence of doctors ???
Hi Jaws :)
I'm sure there are millions of people without access to computers and totally unaware of what's going on and also people with access to computers who haven't worked out how to research.
I have to admit I didn't really research SjS before I got a dx. I'd come across it when researching Hashimotos and hypothyroid but I didn't look them up till I'd been dxd either. I remember looking at an SjS page and thinking "Well thank goodness I don't have that" I was told I did have 'that' less than 6 months later. The same day, I came here I think.
Take care - Scottie :)
Ha ha! ;D Count mine out...he is not only highly 'switched on' and super intelligent, he's cute too. I will no doubt be seeing a lot more of him if I get diagnosed with this....some compensation at least. A bit of eye candy helps to soften the bad news. (So far it's the so called 'specialists' I find are the 'dorks', but I am only at the start of my SjS journey, so maybe it will bring me into contact with more useful ones than some of those I've seen with my CFS/EDS!)
Hey Jaws,
Welcome and interesting conclusions. I've been diagnosed for about 8 years and my main rheumatologist is about 2-1/2 - 3 hours away, depending on traffic, so my family doctor does her best to fill the gap between visits to my rheumy.
If I go to her with a new problem and say, " now I looked this up last night on my Sjogren's World Forum and a number of people recommended ..?" She'll look up the medication if that is what has been recommended to make sure there's no problems with what I'm already on, then will often times go ahead with what's worked for people here. She figures it beats trying to reinvent the wheel. She's developed a very healthy respect of the people of this forum. Her respect of the forum increases my respect of her as she doesn't put herself on a pedestal high above the people she treats, unwilling to listen to suggestions they may have about their own bodies.
I'm not sure about my intelligence level, I'm not a doctor nor have I ever played on TV, but I do believe that I have to play an important part in my healthcare - leaving everything up to everyone else is just too plan scarey!
Tracy
My rheumy also told me right off to learn everything I can and does not criticize when i offer an opinion even if it's way out in right field. Sometimes that's all I've got with regard to why something is falling apart! ???
Something I have found close to home that is real difficult, is people , usually healthy ones that criticize me for doing just that. In my case and specifically my siblings about the care of my mother. Mom is living with cancer and has been since 2005, her and I are peas and carrots, we live next to each other and get into all kinds of trouble, so it wasn't likely that when she was diagnosed that I would be anywhere but at her side. My siblings on the other hand??? It's been a struggle, they just don't get it, about "we are our own advocates".
Healthcare doesn't just come to you and it sure isn't dealt with like on TV. Obviously because of the AI stuff I deal with, 5 or 6 issues incl sjs, since I was 18, that makes it, well allot of years! ;D So I am versed in the system and versed in testing procedure and medications etc.....and I helped my father leave this world supported, as pain free as possible, and at peace, he died of cancer too....just a month before my mom was diagnosed. So I know this stuff and you would think that my siblings would rejoice in that and be grateful for the knowledge i am so willing to share so they don't have to start at the bottom like i did. Nope they want to treat me like I am a Dr wannabe and that I don't know anything. Makes it rough. Dumb healthy (guilty in my case) people! Sandra
Howdy Jaws, interesting observations. I think in my case it was my affinity for reading Sherlock Holmes, (or was it Batman?), that led me to do research. It took a lot of detective work and learning to be my own advocate. I have no medical back round. However, I have a computer and know how to use it. If it wasn't for the internet, I probably would never been diagnosed with SjS. Thank you for your observations. It is food for thought.
Seeker
do not know about the intelligence thing, but I came up with the diagnosis of SS when i did the symptom checker on the web MD board. My dentist and eye doc were concerned about dryness but never said too much about it. I am being treated because I told me doc to look at my symptoms and tell me I did not have SS. Doc decided to try methotrexate and see if I improved any; the improvement was almost immediate. With in one week the swelling was already going down, and at my last eye doc visit, the inflammation in my eyers has improved, as well as the dry spots.
Collie
Jaws, I didn't feel good for over 40 years and just got diagnosed with Sjogrens in 2003. I am an RN and never once thought of sjogrens as the cause of my problems. I knew that I had to have an autoimmune disease as there was nothing else it could be. Also, I told my hubby for years that I felt like my body was betraying me. I sort of thought that I could have myasthenia gravis, but gave that up when I was told by the Mayo clinic that I didn't have it. Boy, were they wrong.
Anyway, all I know is that I googled a lot and would not give up because I was darned I would die without a diagnosis.
And yes, it is almost unbearable to think of people being this ill and having no clue how to go about getting medical care and dealing with the "system". It takes a lot of energy and moxie to be sick, doesn't it!!!!! Irish ;D
I've always searched for information about any illness me or my family had or could possibly have.My husband once told me he admired that about me even though I spent a fortune in books,this was before the internet.I trust my instincts too.
For me, I knew someting was wrong,, all the weird things going on in my body,, and seeing doctor after doctor, test and more test, and everything coming up normal,, I kept researching and thought for sure I had SS,, but blood test always came back negative,, It wasent until I saw a Rheummy in Pittsburgh,, a very good Doctor,, after listening to my story,, he said,, I believe you have SS even without the positive blood markers,, he said in time it will probably show up,
as a nurse , no i hadnt actually known that much about SJS, but mostly i dealt with cancer.
since i had pain during intercouse and had been dealing with so many things that i had so many little things going on with my health, added up it was a big thing. I knew by pins and needles and numbness that by time i was to see the gynaecologist after a 4 month wait , that it wasnt endo and i researched and found sjogrens, when gyn doctor noted vaginal dryness , i told he rmy symptoms and we both agreed SJS symptoms, but if i hadnt thought that and pushed it i doubt that would have been missed.
Now rheumy in absence of positive blood work will not hear of SJS only sicca complex and fibromyalgia and again no treatment.
Now i am back to researching the difference between both so when i hiot the NHS rheymy appointment im as armed with info as possible, i find that anyone with fibro has a little dryness of sicca, but they can related that to anti depresant therapy, no vaginal dryness , and NSAID dont help fibro pain as its not imflammation, yet they help me when i can bear the stomach problems , sometimes im that sore all over, i swap that for a sore stomach , so my pain responts to anti inflammatory drugs , fibro supposedly shouldnt.if i hadnt got info here id be accepting fibro DX and not know of sero negative sjs or lip biopsies etc.
I agree its scary that ppl here are well read individuals who have told docs time and time again and until it affects their tests its not happening.
I agree whats worrying is the ppl who wouldnt know where to start in argueing with the docs or pushing for tests, and accept the yaddda yadda that we get , leaves you with a heavy heart .
T x
Definately an interesting observation. I am a teacher. When I started feeling bad, and my doctor ran blood work, my rheumatoid factor came back positive. He referred me to a rheumatologist. In my internet searching, I really thought that they were going to diagnose me with lupus. I kept seeing the term "Sjogren's Syndrome", but didn't think too much of it. When the rheumatologist started questioning me about dry eyes and dry mouth, it was an "aha" moment for me.
You have a point. I was able to originally suggest to my doctor to check for Sjogrens based on my own research. I'm so glad my doctor was open to my research as many doctors have too much ego to allow a patient to think they know more than them.
Steve
I'm the extreme opposite. I have no medical training nor did I know anything about anything when I went in finally years after I started feeling bad. I told the doc, "please test me for mono, I think I have mono" LOL... he did but he also tested my ANA too and came back positive and he said I need to see a rheumatologist. I said "does that mean I have mono?" FOFL ::) :D
I came about it kinda backwards:
5 yrs ago I was diagnosed with NHL in my Right Parotid gland, (the Sjogren's lymphoma) and learned about Sjs then. "But I don't have Sjogrens" I would always say, and a friend who was also a doctor shrugged and said "Or you haven't be diagnosed yet".
Fast forward to this winter when I had such dry eyes and then developed severe joint pain. I knew Sjogren's was a possibility, but I honestly went to my Rheumy thinking it was RA. One blood test proved me wrong, and here I am. I jusst got incredibly lucky to have excellent doctos all the way through, from my GP, to my Onc/Hemo, to my Rhuemy. They all did the right things, asked the right questions and ran the right tests.