I think I might have Sjogren's

[AngelSong]

Hi all,
I am a 26 year old female and I have a plethora of symptoms and wonder if I might have sjogren's.  Since all of you are definitely more familiar with the disease than I am, I'm hoping you can tell me whether it sounds like I have it or something else.

Probably since around puberty, I have had various problems.  Dry eyes being one of them.  People used to make fun of me in school because I 'blinked constantly'.  Actually, kind of recently, I even developed a hard bump on my eye that stayed for about a month and then eventually went away.  I also get sores in my mouth that will come and go.  I have also had a lot of cavities, although my dentist tells me that I take really good care of my teeth.  I'm not sure that I have dry mouth, although it's hard for me to tell because I'm constantly drinking water.  It's rare to see me without a drink.  I also have vaginal dryness. I feel like my vision is blurry a lot of the time, and an eye doctor told me that my eyes have difficulty focusing.  I frequently get headaches and often feel tired.

My mom has the same problems, and every time she's had an ANA test done, it's come back positive, but she never follows up on it because she's stubborn and avoids doctors.

My husband is in the military, so I'm only able to go to military hospitals.  The hospitals are terrible and overcrowded.  When I tell my symptoms to a doctor they treat me as if I'm a hypochondriac, so I've stopped bothering.  We will be  moving to a new base soon and I'll have a new hospital to go to and I'm wondering if I should pursue getting an ANA test done?  What do you all think?

[JannaLee]

Angel,

I think (remember I'm totally NOT a doctor) your instinct is telling you something, otherwise you would not be here.  And you have to honor your gut.

So, I would give it a try.

It is very difficult to know how to handle a doctor in a situation like this, as so many of us can attest.  There are the guys who appreciate research and guys who don't.  It's a gamble.

If I were you, I would read this forum and google a lot to see if you have other symptoms (evidence of Sjogren's) you don't realize are related.  The opening page of this site has some real good articles too.

Start keeping a "symptom journal" to show the doc.  It will help you too.  Put the eye bump on it right now.

There are more tests you should take than just ANA.  You can ask for the Sjogren's Panel.

I hope I've helped you!
Janna

[Linda196]

Hello Angel Song, welcome to Sjogren's World.

I agree with Janna, follow your instincts...with something of a family history, and all of the symptoms you describe, something is happening, and you need to find out what.

Starting with a new doctor may give you the opportunity to get some results, and first impressions being all important, try going in for your first visit with "ducks in a row" as the saying goes...a factual symptom diary, your Mom's history (even though not followed up), if possible a note from the dentist stating the deterioration of your teeth despite good dental hygiene, and a request (polite demand?) for ANA, ENA, ant's/SSB, ESR and general blood testing.

Although it's sometimes difficult, try not to become emotional, so that the doctor sees you as a partner in your own health care, and doesn't make the leap to "hypochondriac". Once you get to know the doctor, and hopefully establish a rapport, then it's the time to let him or her know how you've felt like your treatment has been less than satisfactory because of the "it's all in your head" syndrome, but it's probably best not to give them any ideas along that line before then.

I hope you find a good, caring and knowledgeable doctor at your new posting, and please, let us know what's going on with you and your SjS journey.

[Redetha]

You know your body better than anyone.  I agree...follow your feeling and remember this is the best site on the internet for support and answers....Good luck at the next hospital...and don't let the doctors intimidate you ..You deserve answers  !!!! 

[AngelSong]

Thank you all for replies.  I have been tested for various things like hypothyroidism, diabetes and even B-12 deficiency, and it's all come back negative.  The most recent thing with the bump on my eye, the dr said to me, "it's probably a pinguicula, the only other thing, it could be caused by an autoimmune disease, but you don't look sick."  I requested a referral to an ophthalmologist, I had to wait a month for the appointment, and of course it went away 2 days before the appointment.

I was reading about more symptoms related to sjogrens, and I also get numbness and painful tingling in my hands and feet. I also have very frightening, visual hallucinations a couple times a month upon waking.  Most commonly of a giant spider in my bedroom, sometimes of a man walking around the room.  The hallucinations are something that my mom and twin sister also get.  My mom has a history of getting "bell's palsy" in her face.

[KJ]

I so completely, positively, and irrevocably, world without end, know just what you are going through!!  I will give you some tips based on my experience.

I go to the Elmendorf hospital in AK.  Where are you stationed?

It's difficult to see same family practice provider more than once, but this can work to your benefit as it did for me.  Eventually you will see someone who practices modern medicine!  Ok, If I were you I would book an appt. today so that you can get in within the next 2 months , Have everything on paper that you can to show why you should have a SS panel.  The family practice providers do not have experience with SS, so don't be surprised if they are confused (SS patients are referred out to internal medicine docs), and they may want to check for many other things as well (can't hurt).  You will get your bloodwork ordered, and if not go straight to patient advocacy and ask for a second opinion, although I really doubt that you will be denied the tests.  Also, be sure and not mention that you have been doing research on the internet as you will instantly be labled as a hypochondriac, just have everything simply stated on paper.  Try to feel sorrow for a provider, in place of justified anger and frustration, if they mistreat you (you do not need the stress of having a defensive caregiver), and find someone who makes you feel at peace in their office. You have these rights, and you deserve them.  Again, I hope it does not get to that point.

The earlier you find out, the better for you.  The articles posted on this site have given me great knowledge.

All of my issues "looked normal" too, but so did Ted Bundy...

Let me know if you have any other questions that I could help with.

Love and Hugs,

Kellie

[Scottietottie]

Hi Angel 

Welcome to Sjogren's world. I'd just like to agree with the advice the others have given. I hope you get some answers soon. I know being labelled hypochondriac is no fun - and untrue.

Take care - Scottie 

[JannaLee]

Kellie!

You are so wonderful!  Lately we have been kicking around slogans for Sjogren's T-shirts and I think you've nailed it!

ALL MY ISSUES "LOOKED NORMAL"...BUT SO DID TED BUNDY.

Such excellent advice!  You are a keeper!

Janna

[lelole]

Hi Angel,

I just wanted to tell you that I have recently had to go to the doctor and suggest Sjogren's, and although I was really worried about it, actually, because everything fit, I was taken seriously and had nothing to worry about...

I do agree with everyone else though that it is worth being prepared - having all of the common symptoms written down and how your history is the same.  It may be worth starting off saying something about how worried you are about sounding like a hypochondriac, and how you don't want to self diagnose but...

It may also be worth stretching the truth, and saying you were discussing your problems with a friend/relative or whatever and they suggested Sjogren's and lent you a book?? Avoiding any suggestion of searching the internet!

Hope that helps, and good luck, keep us posted!

Leah x

[KYMOM]

Angel, I feel for you with all of the uncertainty that you are coping with.  It makes things more difficult when you have not insurance, a high deductible or insurance that limits where you can be seen.  If you feel that something is wrong it usually is.  Trying to deal with all of the diverse symptoms that come with Sjogren's is hard. 

I have come across so many people that have the same problems that I have and I did not even know that these were symptoms.  There are many here that have it so much more difficult than I do that I cannot complain.  Have faith in yourself and continue to try and find the answers that you need.  Do not let a doctor make you feel that your symptoms are in your head.  You will find some excellent advice and support from the people that you will meet at this site.  You are not alone!

Even after a biopsy and a diagnosis I allowed my primary Doc to make me feel like I did not have Sjogren's.  Just her reaction after all of the test and visits to specialists made me second guess the diagnosis.

One big thing that I have learned from those that traveled this path longer than I have and have battled more professionals than I will ever encountered is that you have to be your own advocate.  Most professionals do not know or understand all that Sjogren's involves.  I am not sure that it is possible to understand fully how this works or all of the possible combinations of symptoms that can some from Sjogren's.

Keep a written log of your symptoms.  That is advice that I have seen often here.

Good luck and I hope that you can find the answers that you need soon. Roxanne 

[Pisces24]

AngelSong: One phrase really got to me. The doctor saying "you don't look sick".

Just the term "you don't look sick" kinda ticks me off.    Some people just don't show "symptoms", or don't know what the symptoms are. I have a friend that had a heart attack and didn't know it.   You do have to be proactive with the doctors and remind them about your symptoms even when tests come up negative.

I got thousands of tests run on me and was a puzzle for many years. I didn't have the symptoms they thought I should have for what they thought the problem might be  My GP, bless his heart, kept sending me to different doctors (I got a 2 yr run around)  until finally one at least made a diagnosis of indolent lymphoma and was monitoring me. I got an SJS test from that one, saw a rheum dr and now was finally diagnosed w/SJS 1 month ago.   Hang in there.