I thought members might find this article interesting and helpful either for themselves or for use when consulting medical professionals.
Many of us have had less than pleasant experiences when trying t get diagnosis or treatment for Sjogrens and this article written by a medic suffering from Sjogrens puts things into some perspective and confirms we are not all delusional or cynical when getting negativity from our so called carers. There is a clear void in the training of Medical staff when it comes to AI in general and SS in particular.
AB, this is very informative. Seems like a helpful thing to print up and take along on a doctor’s visit if someone is seeking diagnosis, along with a journal about symptoms experienced. Thanks for posting.
Disneygirl that's what I hoped it mirrors so much of my experiences and I have posted so many times about the lack of training/interest in SS by medics and how they are trained to be dogmatic and dare one say arrogant but despite being at med school for a while I am not a medic and some don't take such words kindly. I hope it helps many others to get a better relationship with their healthcare team or if not ... a better healthcare team remember who pays the bils :( I hope journeys such as yours and mine and so many millions like us will get easier when it's in the open.
Wow…part of that wish list would be that doctors actually read that article. I was so glad to see that they point out that it is SO much more than a little dryness. We know that but many docs don't. Even after all this time I still feel a little nuts trying to explain that to people. Thank you for sharing it.
I'm still waiting for an official diagnosis from a Rheumy (have an appt for a 2nd opinion at a Med Univ in April), but both my optometrist and dentist believe that's probably what's going on. Looking back, I started with stomach issues last March and then symptoms started snowballing (neuropathy, severe GERD, dryness, extreme fatigue).
Great article. It addresses the lack of criteria and knowledge by practitioners (rheumatologists included) when it comes to autoimmune diseases, esp Sjogren's in this case. When there's a confusing bunch of symptoms the "autoimmune" light bulb should turn on first thing before diagnosing hypochondriacism, depression. I was DXed with autoimmune hepatitis one year before the following 2. It took me 2 years of appointments and two hospitalizations to get to a rheumy and then diagnosed with Sjogren's and lupus pretty much at the same time.
I see a doctor in physical medicine who always believes me and has helped more than the others. My joint, spine, and muscular pain diagnosed in 10 questions or less.
I know, I'm off on a tangent. I get broiled when I think about missed or no diagnosis. I wish all autoimmune research would cross over and that docs would think autoimmune instead of just a flu bug or crazy.
No one seems to no. In my area what it is especially the er, has anyone been able to go on disability? I work in a machine shop and I’m so fatigued I can barely get thru the day
there isn't a link underneath my post is a tag line that says attachments and under that is a pdf symbol which you cab click to open the articel or download it. You need a pdf reader like acrobat or foxit.
Totally agree with your crossover comment it drives me mad that of all AI SS is the least researched but most common.
I believe that most are a spectrum merging 1 into the other and what you end up with is determined by your genetics and possibly the envirnmental trigger.
USAgurl said:
Great article. It addresses the lack of criteria and knowledge by practitioners (rheumatologists included) when it comes to autoimmune diseases, esp Sjogren's in this case. When there's a confusing bunch of symptoms the "autoimmune" light bulb should turn on first thing before diagnosing hypochondriacism, depression. I was DXed with autoimmune hepatitis one year before the following 2. It took me 2 years of appointments and two hospitalizations to get to a rheumy and then diagnosed with Sjogren's and lupus pretty much at the same time.
I see a doctor in physical medicine who always believes me and has helped more than the others. My joint, spine, and muscular pain diagnosed in 10 questions or less.
I know, I'm off on a tangent. I get broiled when I think about missed or no diagnosis. I wish all autoimmune research would cross over and that docs would think autoimmune instead of just a flu bug or crazy.
It's funny, when I initially mentioned Sjogren's to my older sister (who has been experiencing a slew of symptoms for years), I think it went in one ear and out the other. However, once she finally read up on it, it made her start questioning her own symptoms and prompted her to request a workup last week. She should be getting results this week. It will be interesting to see if anything shows up, as it would definitely support the genetic component...
There is definately a genetic component that "allows" the immune system to become damaged "corrupted" when exposed to something trouble is we don't know what then something or even things is/are retroviruses, mycolasmas, l form bacteria, chronic stress and gut microbiota are all suspected by well respected researchers but no conclusive evidence as yet.
SS is not the only possibility AI run in families but the exact disease seems to vary again for reasons no one knows.
I know SS mums whose children have ME, RA PSA, twins where 1 has SS the other doesn't and 1 family where 3 sisters out of 3 all have SS.
It is a messy jigsaw I'm afraid. I just hope that you and your sister find our site helpful and get the best treatment possible.
My sister has been diagnosed with Raynaud's so I think when she read that SS can occur along with that, it really made her start to think.
I went through a very stressful time right before my symptoms started spiraling, so I definitely think stress is what triggered my symptoms.
I'm a thankful to have found this site, as it provides a bit of comfort to know that others are experiencing similar symptoms and are having a tough time receiving a diagnosis.
This is a good article! This lady was lucky to have a physician who was willing to go with 'probable Sjogren's' as even with the testing available, it sometimes takes repeated tests to come up as positive allowing for the diagnosis.
As you know, but others may not, I was fortunate that my Internist finally looked past the car accident and into autoimmune, and came up with the 'overlap syndrome' diagnosis, and that I was finally able to work with him to find the right Rheumatologist who could take his findings and send me a detailed questionnaire to get all of my input. This allowed my present Rheumatologist to diagnose all three autoimmune the very first visit, but it took years to get to him.
I'm curious as to why the tests can show negative one time and off the charts high the next when the symptoms seemed to have been just as bad the first time tested. Is it the lack of a more targeted test or simply an elusive disease, or both?
I wonder sometimes too, if its not the proverbial Searching for unicorns with a metal detector. If they don't do the specific test for it, they won't find it. I don't know how it works but it scares me sometimes that the test can show positive one time and negative the next. If my rheumy ever moves, retires, etc I'd be scared to death of starting over with someone else.