Not diagnosed (yet)...

[Head2Toe]

I developed tooth sensitivity and facial/jaw pain last week, and thankfully was able to get into a new dentist a few days later.  During the exam the dentist said my mouth was very dry and asked if that was normal for me.  When I said yes - he asked if I had dry eyes.  I said yes, I had been diagnosed with dry eyes more than 15 years ago.  He then suggested I make an appointment with my doctor to get tested for SS. 

As it turned out I did't have any dental issues - just ANOTHER sinus infection.  I've lost count of how many sinus infections I've had over the past five years - although this is the second time I've been diagnosed by a dentist.  My nose never runs unless I am crying, and I rarely cry anymore because even when I am very sad (e.g. funerals) I control myself because the production of tears really burns my eyes. 

I will only outline my current and ongoing medical issues in this post.  There is so much more, but my other symptoms have come in 'bouts' over the years and thankfully are not currently an issue.

I had been to my doctor just two weeks ago to complain about a sore mouth and vaginal pain.  Over the past year the roof of my mouth has constantly burned and I get lumps and sores that come and go with no apparent pattern.  My doctor acknowledged that my mouth looked irritated, but he had no suggestions for cause or treatment.  During the appointment I refused a pelvic exam as the doctor had done one a year ago after I had made multiple trips to him to complain about severe vaginal irritation and itching.  He had prescribed meds for a yeast infection (that I knew I did not have - the itch is external, not vaginal), OTC cortisone cream, zinc cream, instructions on how to 'wipe properly' *sigh*, instructions about avoiding potential allergies, etc.  Nothing has provided relief - and over the past three years I've tried just about everything from antibiotic creams to olive oil - and everything in between.  Over the past year my issues have gotten considerably worse and I am now at the point where intercourse is painful enough to avoid.  Thankfully my doctor has finally agreed to send me to an ob/gyn - although I can't get into see her until mid-October.

I have followed my dentist's advice and booked another appointment with my doctor (next week) and have printed material (from this website) in case my doctor is unfamiliar with SS or the tests required.  I am going to demand all of the recommended tests for SS - if only to rule it out.  I've been on this website every night for almost a week, and I want to thank all of you for making me feel just a little less crazy, and for contributing to a strengthened determination to obtain solid answers to what's going on with my body.

[irish]

Welcome to this site and know that we are all fellow sufferers who have learned things along the way that we like to share with others. Pretty much similar (but not totally the same) stories and many of us have been called crazy to psych cases.

If there is one that that autoimmune disease demands it is the perserverance to stick with the doctoring to get the symptoms treated. Took me 40 years to get diagnosed and I had 4 autoimmune diseases plus severely low t-cells. Of course, over the years I was sick a lot and known as a hypochondriac.

We sjoggies learn to be tough and hang in there because we have to advocate for ourselves in order to obtain treatment. The diagnosis is not always necessary but it sure is good to to be validated by the doc and have symptoms taken seriously and treated. A daigosis is nice, but doesn't always show up for years and then one can have positive blood work one time and negative the next. Once you have positive blood work with a diagnosis negative bloodwork doesn't mean you are cured. It just means that your bloodwork is being fickle again and giving you a run for the money. Doesn't mean emission either. Loss of symptoms for extended period of time can be considered remission.

Good for you for hanging in there and sticking up for yourself. Those doctors need to be educated and it sure is a long, slow job that all of us are taking part in. Good luck. Irish

[quietdynamics]

Great that your dentist was perceptive, asked questions and gave you guidance.

Here is some information for your consideration:

About Sjögren's Syndrome Look below through the categories for over 100 short but essential survival tips for Sjögren's patients.
General Sjögren's Survival Tips
http://www.sjogrens.org/home/about-sjogrens-syndrome/survival-tips

While in the process of being tested I would advise to not add supplements, etc. as some may skew tests or symptoms you need to report as is. Ask your Dr.

One specialist requested I keep a symptom diary.. this became a very useful tool for me across the journey.

I simply made a Word Chart with columns for
Date/Time... Event (symptom)... rated it (scale 1-10) ... Prior (what was going on before symptom) .. last column title "notes"

The diary was not to become 'hypervigilant ', nor obsessive.. but, rather it helped to see if there were symptom patterns and triggers. Information the Dr. could use and I could use to make adaptations.
It helped me prepare for appts and condense issues that needed to be covered.


A good Rheum, will evaluate you and test for SJS and other conditions. 

*Gyn..can you request to be put on the cancellation list?
Rheums can take a long time to get an appt with depending on where you live.

Nasogel.. may sound odd to some. My nasal passage is so dry that I need to lubricate it .. just so I can blow my nose.
Ears are dry and sometimes would wake with what felt like a raw,sore throat.
PCP Rx'd Nasogel.. even to use in my ears and it has helped me.
Currently I am using Systane drops for dry eyes.
Artificial tears.. thin viscosity.. do nothing for me.

I wish you well with your appts.

[quietdynamics]

Just found one of the pamphlets that was handed to me at a Sjogrens Center with the 'body chart'

http://www.sjogrens.org/files/brochures/WhatisSjogrensSyndrome.pdf

[Carolina]

Welcome Head2Toe,

You are in the right place.

Hugs,  Elaine

[Head2Toe]

Many thanks to everyone for your kind responses.  I saw my doctor today and gave him a copy of a SS brochure (the one with the body chart from the link quietdynamic provided).  I had highlighted all of the symptoms I have experienced - which was most of them.  I reminded him of how sick I had been last year (5 painful and frightening months) and how he had suggested at the time that it may be auto-immune related but the blood tests had come back negative. 

To my great surprise - my doctor read the entire brochure and then said 'I guess we had better get you in to see a Rheumatologist!'  Although it will undoubtedly be months before I can see the Rheumatologist, I wanted to shout with joy!  I felt validated!!!

Now I'm looking for your suggestions for the following: 

What kind of information do you take with you to your Rheumy visits?  Should I write down some of the other symptoms I've had?  (I kept a diary last year.)  Or is it possible he will have a questionnaire of some sort?

What if I'm only experiencing the 'ongoing' symptoms and am not in a really bad way when I finally see the Rheumatologist?  Do you think that will cause him to take me less seriously because I'm not in crisis at that moment? 

It might sound silly, but although the ongoing symptoms I experience are miserable, they are almost NOTHING compared to what happened to me last year.  As my illness progressed, I honestly thought I was going to die of some yet to be diagnosed terminal illness .  Despite my pain, exhaustion, and 10 pound weight loss, both my doctor and an Internist told me they couldn't find anything wrong (except when I had pneumonia and sinus infections).  Then over about a 2 week period the symptoms faded away as mysteriously as they arrived.  My biggest concern now is that if they couldn't find anything wrong when I was REALLY sick - how are they going to find anything wrong if things aren't nearly that bad

[dryinOhio]

Sometimes being a doctor is like trying to find a needle in a haystack (never would guess I am from the Midwest- lol). You have pointed them in the right direction and they WILL be able to help you. Although not everyone has the right to put an M.D. after their name, we all have the privilege of living in our own bodies. Never underestimate the value of the information that provides. You doctor listened to you and took your concerns seriously - I am sure you're rheumatologist will be as good or better. Just hang in there... Waiting is the hard part but you have been through much worse. 

[Joe S.]

Welcome to the group.

Do not get discouraged if it takes 7.5 years to get a diagnosis. (That is the national average from the last study I read.) Your dentist and eye doctor can help you to ease some of your symptoms.

"Spoon Theory" will help you and your significant other understand your good days and bad. I think the web sight is "But you dont look sick".

meditation can help with pain. I have found that reflexology and reiki also help with pain. I use carrot juice, vitamins, minerals and other supplements to help manage this health challenge.

I wish you good luck in you war on this health challenge.

[finallyadx]

Welcome head2toe - so glad you found us and felt comfortable to vent and share. 

I had recurring sinus infections, heart palpitations, anemia - unexplained, severe weight loss (only name a few of my symptoms), and it took two years to diagnose me.  I believe I was thought of as a hypochondriac and someone who had severe anxiety and depressive issues (YES I DID HAVE ANXIETY - I did not  know what to ask, who to see, etc. so it took my firing two drs and finding my third who believed iin me and my symptoms enough to not give up on me and find the answers...low and behold sjogrens. 

Be persisent - keep a diary as another member stated  - could be very important in your visit with your dr or rheumatologist.

You have come to the right place - you will find members will be very supportive, kind and informative.

Please keep us posted.

Hugs
Kim

[warmwaters]

Don't worry about being "at your worst" when you see the rheumatologist.  Summarize your symptoms on a piece of paper, and make a couple of copies. One is for you (it's easy to forget details during an appointment), and one is to hand to the doctor along with whatever other paperwork he/she wants.

For example:

5 sinus infections from April 2013- June 2014
Recurring pain in my jaw - at least 1-2 times a week since last winter
Crying is painful
Eating crackers hurts
Vaginal dryness and pain on intercourse
left knee aches

(obviously I'm making these up)

Every doctor is a little different in what they ask first.  Also realize that they are at the beginning of the story, and you are already in the middle of it.  It may take a couple of visits before you are both caught up with one another. 

Focus on the goals of diagnosis and treatment. Some doctors won't treat without diagnosis, and some will. 

Best of luck, and good for you for taking the info to your doctor.   

[ejectionseatfixer]

Im definitely in the same boat with your symptoms- and more keep getting added. Today, I couldnt see very well out of my right eye at all (really fuzzy), my teeth have felt more ssensitive than normal and my eyes feel like theres something in them a lot. I get chronic sinus infections and my left ear rings constantly. My sinuses are so dry that I have to use Nasogel daily to keep them moist. To top it off, my eczema is progressing right alongside all of this, Im now getting white spots all over my body. Very often, I have a hard time seeing in the mornings.