New Person!

[Trillsy]

Hello!  I stumbled upon your forums while doing some research, and have been lurking about.  You seem like such a wonderful bunch!

I have spent the last fifteen years trying to get doctors to listen to me.  Unfortunately, being an artist, I have spent most of my adult life without health insurance and have had -awful- luck picking doctors.  I either have to take what I can get, or I have doctors that want to rush me out in ten minutes to get to the next appointment, doctors that are -complete flakes-, or just think I'm crazy.  After so long of joint pain, swelling, dryness, crushing fatigue, reoccurances of tendonitis, bursitis...I know i'm not crazy, just being driven so!  I had insurance for a bit, and had one of those 'in and out' doctors that threw a bunch of expensive tests at me, ignored a couple of not normal results (elevated ANA), ignored the fact she treated me for eye infections three times, treated single symptoms, and pretty much wrote me off a week before my insurance went out the door as 'depressed with fibromyalgia' (As in, she thought fibromyalgia was the name for the pain depression has).  (I think I'm very fortunate to have at least had a diagnosis of Reynaud's on the first go around...so I know why my hands turn colors and swell, at least, if nothing else!)

Not a month later, I ended up in the emergency room because I could no longer open my eyes because the 'foreign body' feeling in them was so bad it hurt way too much.  Long story short, I learned a nice long term at the eye doctor the next day...filimentary keretitis.  Told me I needed to 'follow up with my regular doctor'  (The flaky in and out woman), as this was a sign of an underlying autoimmune condition.  Yeah, well, no insurance, can't pay...

At the very least, I could do my own research, so when I CAN go to a doctor again...I can be armed!  I came across Sjogren's Syndrome (and had it suggested to me several times as a possibility), and while I am not going to diagnose myself, the symptoms are eerily familiar, especially the dryness!  (Eyes, nose, throat, constantly dry!).  I am, in fact, arming up again, THIS time trying to get all my sporadic records and typing out a description of what I go through daily (is that a good idea?  Should I just flat ask to be tested for this?) and have wanted to find a place that understood and could just...help...while I went through all this! 

Thanks for letting me ramble!  Trillsy

[Bernice]

Trillsy,

Hello and Welcome!

Trillsy, Your post really struck a cord with me, though I don't have the issue of being uninsured I feel for those that do. I can't imagine being sick and having to face such uncertainty as not feeling knowing that I will be seen and well treated because of a lack of insurance. Heck! I get that being insured! I really don't want to get into all that I have to go through at my doctors. Let's just say it's enough to make a girl scream foul! I am in a bind because I have a great doctor, it's just that his staff sucks, so I'm torn between leaving or staying.

I do think reguardless of how many times you have been overlooked you have to presue treatment, and YES! I do think you should insist on a test for Sjogren's and  not just yhe run of the mill blood test, even though it sounds like you have already been tested, with it just being overlooked or should I say. ignored!

Keep your head up and make the most of your doctors visits.
Bernice

Life with an illness is very trying at most times, especially when you have doctors that don't seem to get it, BUT you HAVE to push these doctors for answers and not take being pushed off.

[Trillsy]

Thank you for the kind words and encouragement, Bernice.   I get so much anxiety just thinking about going AGAIN, thinking it's all just going to be a repeat of the rest, I just don't know what to do!  I take from what you say that my idea of being more proactive is the way to go.

I'm fairly certain this is one I haven't been tested for, as I never even heard of it until after the eye incident (which is ongoing, but thankfully hasn't been as bad as the time I ended up in the ER, and before that, I never actually, believe it or not, realized the dryness was not normal!  sure, I use a lot of eye drops, and drink more fluids than anyone I know to wet my throat, and have nosebleeds when the air is dry...but none of these doctors have even blinked at those things. )...what muddies the waters is that both my mother and her sister have lupus, and many of my symptoms echo that.  Doctors tend to hop straight there then give up when they rule it out, or it seems like it.  There have been a few blood tests, and MRIs, bone scan, a TON of xrays...all focusing on the pain problems.  The only rheum I've been to zeroed in on the hip bursitis, stuck me with cortisone, and tossed me out the door...

I swear, finding a good doctor feels like a quest for the Holy Grail!  I'm sure he or she is out there...and hopefully understanding about payment plans!

Trillsy

[Scottietottie]

Hi Trillsy 

Welcome to Sjogren's world.

It's interesting that you have autoimmune issues going on in the family because, although not directly hereditary, AI diseases do seem to occur in families although not necessarily the same disease. Ihave a sjogren's/lupus overlap. My son has just been dxd with Crohn's disease. My sister in laws both have thyroid problems and pernicious anaemia but my hiusband developed psoriasis. My mother in law had penicious anaemia but her mother had rheumatoid arthritis.

I think, under the circumstances, it would be a good idea to be tested for SjS. The down side of that is - it is possible to have it and to be sero-negative - nothing show up - and you'd be told you were depressed again! 

Would it be possible to see a rheumatologist and tell him you've been doing some research and Sjogren's fits uncomfortably well?

Keep us posted!  I hope you find the site useful.

Take care - Scottie 

[Poochie]

Hi Trillsy,
Welcome to our Sjoggie family.  I think the journey for most of us was long and exhausting, but in the end we found a little relief. 

It took me over 30 yrs to find a doctor that knew what the heck was wrong and my road back has been long and painful but for now I'm comfortable and able to do some things I love.

I hope you find relief and comfort soon.  Until then, please know that all of us will help you through your journey.

Pooh

[Bucky]

Hi Trilisy . . . Welcome!

As you will find reading thru all the posts, YES, you do have to be your own health advocate.  Research as much as you can so you are armed with the information when you do finally get to see a doctor.

It's also suggested that you keep some sort of journal (whether on paper or in your computer) of your symptoms, aches / pains, when they start, how long they last, if anything helped them (heat, ice, Advil, rest, etc.).  I know for myself that I can never remember how long something lasted . . . was it a day, 4 days, a week, a month??

If you are adding eye drops frequently, I would suggest using the preservative free kind (these are over the counter at the store).  There are many different brands - it just becomes a personal preference.

For your mouth have you tried any of the Biotene products?  These are OTC too.

I've also found that a cool-mist humidifier in the bedroom helps with nose issues - especially during the winter months.

Again, welcome.  There is tons of information here.     If there is a specific topic you are interested in, you can put into the search box in the left top corner to find previous posts.

Take care,
Bucky

P.S.  Please pardon any typos . . I just had my eyes dilated and I still can't see clearly.

[eyeamdry]

Hi Triillsy,
Sorry you are having so much trouble with docs, and no medical insurance.   My daughter is now unemployed and has Type I diabetes and is paying COBRA to keep her insurance going. 

One thing that might help you with your eyes is to visit another website called www.dryeyezone.com.  There is a bunch of information on there which might help you deal with your dry eyes.  I know you're having infections, too, which can't be helped with pallative care information.  You might spend a little time on there and maybe you can find some information that will give you a bit of relief.  Best, Lucy

[lynnmarie219]

Hi Trillsy!

I just want to welcome you to Sjogrens World....I see that you have already received a lot of good advice from the others to start your journey into finding a good doc and a correct diagnosis/treatment.

I would second what Bucky said in answer to your question about writing things down...yes...it is always a good idea to write down your symptoms and anything else that will help you remember what you want to mention to the doc when you go in for a visit. I always write down my current meds...a list of symptoms...and a list of questions and what refills of medication are needed. That way you wont forget anything....as long as you don't forget to bring the papers... !!

Welcome to the family...read all you can and make yourself at home here...its a very safe place with lots of people who really do understand! 

[Bernice]

I found the key to getting doctors attention is to keep repeating symptoms over and over again. Every time you see them tell them your symptoms. Dry eyes, dry mouth, dry nose etc...... Sure you too will get tired of the same thing every time you go, but so will they and press for answers.

Because we have so many symptoms and many of them shift, we can go to doctors with so many different things going on each time. I think it is okay to add others on, but always mention the main symptoms even if they are not the major source of what ails you at time of visit.

For me it was " I'm tired, full body pains" ALWAYS!!!! Finally my doctor listened! This he told me is what helped him to suspect an AL.

EVERY TIME I WENT I LIST THESE AS MAJOR PROBLEMS!

[Trillsy]

Thank you so much for all the welcomes and advice!  I can't express how appreciated it is!     I am really starting to feel like I can at least effectively arm myself so the next doctor round won't be a waste of time and money!  Even if something is ruled out, at least it's ruled out, been looked at, and all that!  The journal idea is just great...so easy to get overwhelmed, so easy to end up with your appointment on a good day, or a whole ton of other things.

Scottietottie:  I think no one is really sure what the hereditary links are, but it seems like there is at least some thought there is some.  I was told on at least one occasion that my odd ANA results crop up in people with relatives with lupus without them having it themselves, but have read/heard that nowhere else.  I just file it all under 'things they don't know'.

Bucky: I have some eyedrops I really like (given to me by an eye doctor after the emergency room stuff), OTC, and don't set my eyes on fire like most do.  They aren't cheap, but worth it!  I'll look into the others!

Everyone, just thanks!  I'll be poking around, for sure.

Trillsy

[Patze]

Hi Trillsy,

Let me also welcome you to the SJS World!  Please do look around as you'll find that we've talked about a ton of stuff, and if you don't find anything going through the search engine, just ask.  You'll find that this is one of the friendliest boards around, and there's usually someone about that might be able to help.

I see that you've gotten quite a bit of information and there's not much that I can add.

Again, welcome and here are a few more websites that might be of some assistance to you. 

http://www.dryeyepain.com/
http://www.dryeyedigest.com/

Take care and hope to chat with you soon -

Patze

[Pisces24]

Unfortunately, most of us had a long history of seeing different doctors until we got a diagnosis. It took me 6 years and I was just positively diagnosed March 2009.
I got the diagnosis after going to a teaching hospital and seeing their top immunologist. He thought he'd test me due to the teeth cavity problem and partroid gland swelling in the past. I didn't get the #s but I tested very high for A&B SJS. Prior to that it was dr to dr, getting brushed off, drs driving me nuts and my gp being ticked because "specialists" couldn't find the problem.

I am so sorry you had to suffer through all the "duh" doctors. I was a caretaker for my folks for many years so that kinda got me to learn to be "pushy" or an advocate for them and later myself.  It took awhile for me to learn to be an advocate for myself (hence the 6 yrs to diagnosis).  Stuff like this hits you for a loop when you get a diagnsosis and you have to "process it/ get your head around it" before you feel you can move on and ask questions. I got the "some kind of cancer" and then a diagnosis of indolent lymphoma before I was officially diagnosed with Sjogrens. So I went through the emotional turmoil prior to SJS diagnosis already. SJS was almost a relief.

I would suggest when you get insurance, to go to a teaching hospital and see their top immunologist. I found with the other drs I saw that when I didn't hit their text book definitions, they tended to putter around or brush me off. The teaching hospitals actually like challenges and I always get 2-3 drs for the price of one. LOL  The top guy is always asking the student questions and presents a good rappoor w/student and patients and listens!

As to doing your own research, please remember that SJS is very individualized as far as symptoms go. Some on this site have minor ones and others have been disabled by it.