How many of you are finding doctors still believe sjogrens is merely dry eyes and dry mouth?
Many doctor's don't seem to know much about it considering how common it is. It's also overlooked quite a lot when trying to make diagnoses of other things. Sort of doesn't get the respect it should.
Hi :)
I've met far too many doctors who think its just dry mouth and dry eyes. I do my best to educate them. I don't think they get much training in autoimmunities altogether.... not unless they specialise.
Take care - Scottie :)
Thanks for the replies. I have to say that I was hoping sjogrens would have at least made a dent somewhere.
I should know better.
When I suggested I might have Sjogrens, my GP said it was very rare. Well that can be a self-fulfilling prophesy. It's not diagnosed, therefore on the books it looks rare.
Not rare at all!
I know I'm late to this thread, but the only Dr who knew anything about Sjogrens was my Rheumatologist, who retired in October.
My other doctors are pretty much useless. Even though I have tried to "educate" them. It's so frustrating. I did get a new Rheumatologist, but don't see him til Feb 14! That was the earliest!!
Meanwhile I am going through one of the worst flares of my life! And all I have is my Medical Doctor who really tries to understand, but knows very little.
Kathy
I started with dry eyes/mouth at 46 and wasn't dx till I was 52 by my primary dr...by positive labs and xrays. When I say I have RA...people know what that is but when I say sjogrens...pffftt , they lose interest.
I'm pretty weird as I have had the poor health since 1964 and first autoimmune disease was diagnosed in 2002...Bullous Pemphigoid, a skin disease. Sjogrens was next in 2003 and didn't have dry eyes until 3 months after diagnosis. However, I had been having dental problems up the ying yang and had lost over half my teeth over the 1980s and 1990s. I had dentists who were pretty clueless also.
It has been mentioned by some doctors over the years that they don't spend much time on Sjogrens in training. as an old retired RN I would guess that unless they have a good rheumy professor or a patient in clinic or hospital who is having some of the many other dryness issues and neuro problems they miss out. I'm speaking of the dry vagina, neurological problems (trouble with walking due to balance issues and the proprioceptive disorder).
The proprioceptive disorder is not being able to identify like where to put your feet when walking off a curb... (either day time or night time) which I had. Also another one I had was when I would come home from work at Midnight and park in my garage (which had no light until I got out of car and turned it on) I could not find the door handle to open the door in the dark or had trouble finding the handle to roll up the window. If you are having problems walking in the dark you need to see a neurologist and get this assessed as other diseases can cause this also. A person should be able to find the door handle in the dark as this is something that our brain learns and seems to remember.
Also, just as a reminder, there are the stomach issues and colon issues caused by dryness and neuropathy (gastroparesis). It is so interesting all the problems that autoimmune diseases can cause and it behooves us to "google" and read up on info on many diseases and especially the Sjogrens which can be diagnosed along with several other diseases. I have 5 autoimmune diseases now plus had severely low t-cells years ago which improved with IVIG. The longer we have these diseases the smarter we become. Wish we got paid for all we learn the hard way.Take care all. meirish