So much to learn

Hello all!

I have very recently in the past few weeks been diagnosed with Sjogren's. I actually thought that I was having diabetes symptoms and my doctor though thyroid problem. She vaguely mentioned a disease that gives you dry mouth and dry eyes but as I have learned it is far from just dry eyes and mouth. My Dr ran a dozen blood tests and initial diagnosed me with Sjogren's but also ran another dozen blood test to rule anything else out. Then came the Rhumetologist appointment and also the Opthamologist. They all came to the same diagnosis even though they didn't run anything but blood test and ask about my symptoms. I have no clue if that is normal. I have a managed health care and basically they diagnose you and send you out there with little or no info on what to do next. The Opthamologist was actually the most helpful and I think knew the most about Sjogren's. She prescribed me Restasis so I will see how that goes.

As I am learning about symptoms and everything else, I am getting a feeling that the what I thought was a sudden onset of symptoms was not and that I could possible have had this longer but all the pieces didn't fall into place. Not to mention, I have a lot of anxiety about going to the doctors so I will put it off for a long time and I usually don't tell them everything because I don't want them to think I am complaining about nothing. Now I know that it probably isn't nothing but my anxiety got in the way.

Lastly, I am feeling very guilty...I didn't know about all the autoimmune diseases out there and have been very ignorant to invisible illnesses. Just from what I have been reading, makes me mad that there isn't more awareness out there and it took me getting a autoimmune disease to figure that out.

Thanks for reading,


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Hi Microkat.... I think a lot of us have similar journeys when it comes to putting symptoms in hindsight. We had an entire discussion here one day about things like how many of us has very dry lips as kids, etc. The joint pain & fatigue is very easy to misdiagnose or totally blow off as something else. It took many years for me to get a diagnosis and it was amazing to me how many of my other symptoms came together then. If you are afraid of talking to the doc, maybe keep a symptom diary for awhile and just give that to him/her when you get there. They do need a full picture of what's happening so you'll be getting used to advocating for yourself. :)

As far as being diagnosed by blood test and symptom, that's pretty much it. Par of the course there.

Please don't feel guilty about anything... regardless of where we are from, it seems we are all brought up in a society that doesn't take time to look deeper into things. Even my primary had to remind himself that I have an autoimmune. (he doesn't treat that but he is the central person). He said he is guilty of giving patients a once over a thinking "they look fine". He said he forgets until he looks over the list of meds that I'm on. I told him that is the biggest blessing and curse of don't look like you feel. It was interesting but it reminded me that I have to open my mouth with the docs if I am gong to get the best care possible.

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Welcome Microkat. It is a journey, and educate yourself as much as possible on SS.
And, guilt is not necessary. I think it's that 'walk a mile in someone else's shoes' that comes to mind.

We need to support each other and others with invisible & visible illnesses.

I think it helps when we are able to communicate all of these thoughts and emotions to another that is truly able to relate. (In honest and open conversations)

Welcome to the group. I am new here also and I am glad to have found this place.

Welcome to the group Kat! There is usually a period of time between being diagnosed and feeling like you have a handle on things. I know that when I got my primary diagnosis I was very bewildered for quite a while, and it took a good bit of time to really start to get a handle on things. And then I was also diagnosed with Sjogren's. It's not unusual for an individual to have multiple autoimmune diagnoses.

While you are getting a handle on things, you will find that there are lots of good tips to handle dry eye and dry mouth symptoms. The web site is searchable, so if you have a specific concern you can search and look for your topic.

Welcome Microkat! I was diagnosed with Sjogrens recently also. I am also overwhelmed with the variety of symptoms that go a long with it. As I learn more and look back I've had it for awhile. I was diagnosed by blood test I think that is the way it's usually diagnosed. My neuro put me on neurontin for the neuropathy in my arms/hands and legs. Its helped some. I'm still waiting on a rheumy. I have PTSD also so I know all about anxiety. My psych increased my anxiety meds to help w/the increased anxiety i have now. This can be a very scary thing especially in the beginning. I can't wait until I get a handle on this and the Dr,s! Best of luck! I'm always here if you ever need to talk.

Thank you to everyone! Everyone is so welcoming and there is a wealth of knowledge. I would have been back on here sooner but I am so scatterbrained right now!

Enjoylife-I will definately be keeping a symptom diary. Thanks for the suggestion.

Lisa D-Thanks for welcoming me.

Stoney-Thanks for the tip of the website being searchable...that is so helpful to be able to find info other people have already posted.

Ann D-Anxiety sucks! Just thought I would throw that out there :) I have Generalized and Social Anxiety, but now it is even worse but hopefully it will get better with time.