New here... and to Sjogren's

[tangowhiskie]

Hello Everyone,

My name's Tess.  I'm 26.  I live in the Dallas/Fort Worth area.

About 8 weeks ago, my GP did some more extensive bloodwork, including the ANA which came back positive.  I was referred to a rheumatologist, and told that it was for possible Lupus.  I read up about Lupus, but didn't think I matched the symptoms.  My rheumy also did not think that I matched Lupus.  Meanwhile we did more bloodwork, and I've come back positive SSA and positive RF.

So I decided to read about Sjogren's, and bought a book.  Tears came to my eyes reading it, because I realize I have suffered from this for about 20 years now.

When I was about 6 years old, I started to have problems eating.  I couldn't swallow too much at one time, I was terrified about choking.  I started to constantly need a liquid when I ate food.  About 2 years later, I had a test done at a hospital where I had to drink a contrast fluid under an x-ray type machine.  The results came back normal, as there was no physical/muscular problem with my throat/mouth.

When I was about 14 years old, I started to develop horrible heartburn.  I've always been overweight, so I just figured it was due to this.  But even when I've lost some weight and gotten healthier, the heartburn didn't go away.  Finally, two years ago, at age 24, I was diagnosed with GERD by my GP.

When I was 19 years old, I got a horrible flu.  From that point on, my mouth became very dry.  All my childhood I never had one cavity in my life, and then at my next routine dentist appointment (which I always went every 6 months), I had SEVEN cavities.  How could this have changed?  I blamed it on moving to a city where they didn't put flouride in the water.  Ever since that first shocking dentist appointment, it's been downhill.  I've even had to have one too far gone molar pulled.  At my last appointment, I had ELEVEN teeth to get fixed.  I cried, I felt like they judged me for it since the most obvious reason for a cavity is poor mouth hygiene.

Around this time, I also started having problems breathing.  And a few years later, when I was at the ER for an unrelated issue, and a chest xray came back with inflammation in my lungs.  I was diagnosed with asthma and have been on inhalers ever since.

I was also told about four years ago that I have Hashimoto's Thyroiditis, and started taking levoxyl for that.

My voice is constantly hoarse.  I feel like I can never keep my throat clear enough.  I've always had a dry cough.

I can't go a night without my humidifier running - no matter what season it is.

I've also struggled with anxiety.  Having this internal feeling that something was wrong, but no one could ever figure it out.    I just adapted to the fact that I needed extra water to drink with my meals.  Even my family knows and will share their waters with me at restaurants.  I carry a bottle of water with me everywhere.  I avoid eating out because it makes me anxious.  I just figured my heartburn was from my weight and not avoiding the certain foods that aggravate it.  I just figured that living in a city for four years without flouride was responsible for my teeth decay.    Just anything you can think in your mind to put your anxiety at ease and try to shove that "there's something horribly wrong" thought away.

And most recently, I've had to deal with aching joints and sore muscles and fatigue.  This is very new to me.

I see my rheumatologist next week for a follow up after running those tests.  I have yet to be officially diagnosed with Sjogren's, but the signs all point to this diagnosis.  I've listed the big symptoms I've been experiencing but I'm sure I've left a few out.  I haven't had many problems with my eyes though... although at night sometimes they sting but it's nothing compared to my mouth's constant desert environment.

I'm not sure what the next step will be, but I'm terrified about taking a new medication... especially everything I've read about plaquenil and methotrexate.

I'm angry that no doctors in my past pieced this together for me.  That I've been running around for 20 years with this worsening disease.  But I guess figuring this out now is better than suffering for the rest of my life and never knowing why.

I'm hoping to find some solidarity with this community, make some new friends, and grow a stronger support system.  I think it's the best way to deal with something so large I've got on my plate.

Any advice would be very much appreciated.

[Joe S.]

It saddens me to welcome younger people to this forum. But, Welcome. You will find others in your same age bracket here. You will also find a lot of useful information.

Some of us decided to post what we take in our signature to help others.

[Pisces24]

Most of us went through a bunch of "specialists" before we found one that could give us a diagnosis.  It took me 6 yrs and I finally got diagnosed by an immunologist at a teaching hospital.   I tested VERY high for ANA, SS-A and SS-B.  Yes it does make you mad that it takes so durn long.   

You get so used to living with "problems" you get to think it is normal. Only when it gets bad enough or our dr pushes us do we do something about it. I used to think I just had "allergy" eyes but no - they are very dry.    I also had maybe 5 cavities my whole life (I'm 53)  up until about 10 yrs ago. Now I get about 5 cavaties a year and I take ALOT better care of my teeth now too. Yeah my dentist doesn't get SJS either.  I just get the look and told to brush more. Sigh.

Have you been checked for fibromayagia?  I have a 3rd cousin that has that. Just with autoimmune stuff you tend to get the "other relatives" to stop by.  I got Hashimotos, Reynards and SJS.   I like that SOLIDARITY. Maybe we can get a movement going for getting drs not to dr out of the textbooks.

[Scottietottie]

Hi Tangowhiskie 

Welcome to Sjogren's world. Many of us go through a grievining process when we ger an SjS dx but that's because we all hope that when we see a doctor - they can make us better.

Upon refelection - many of us realise that all the dx is - is a label for something that has been bothering us for years - without recognition.  After the dx we are exactly the same people we were as the day before.

I hope you find the site useful.

Take care - Scottie 

[lynnmarie219]

Hi Tangowhiskie,

I just want to say Hi and welcome you to Sjogrens World.

Take all the time you need to read through as many of the posts that you want. If you are looking for something in particular you can put that topic in the "Search" box in the top left hand corner of this page and find others who may have already posted on the subject you are looking to find information or answers.

Feel free to come here often to find friends as well....this is a safe place to laugh, cry, vent, and unload just about anything we need to on the message boards or in live chat! Welcome to the family!

[tangowhiskie]

Thank you for the kind welcome.  I hope to be able to look around this forum more when I have some time to do so since I'm working currently. It's comforting to hear others tales of cavity issues. I have been so confused about this. My dentist at the beginning kept getting me to upgrade my brushing routine. Nothing worked.

I've been struggling with the new dx too. I broke up with my boyfriend because I didn't feel like a relationship anymore due to the stress. My recent struggle has been the resistance I've received from my roommate over asking her to help me out a little more around my house. If this is what it feels like all the time then I'm not sure how I'll be able to cope with unhelpful people. I'm also trying to get approved at work for a medical leave program so when I'm absent it doesn't count against me but without a dx its hard to get that approved.

[Patze]

Hi Tess!

Let me also welcome you to the SJS World and family! 

A member once told me that that a "label" is just another word, and having a rheumy treat you for your symptoms is whats important.  I understand that you'll need that "label" to get medical leave, but have you spoken to your rheumy about it yet? 

I'm sorry to hear about your asthma and inflammation problems and I hope that you start to feel better soon.

Oh my goodness, a lot of us sympathize with you about the cavities as I've had my mouth rebuilt twice now and have lost several teeth these last six years as well.  I'm still amazed by the thousands that I've spent with dentists, and there's no way that I'll be able to do that again (have a couple of teeth now starting to break again, and my mouth is not that dry), ugh.

Again, welcome, and I hope that you can join us in the chat room soon!

Take care -

Patze

[Carolina]

Hi, Tess!

Adding my welcome to Team Sjogren's.

The combination of grieving over the diagnosis, and suddenly having all the pieces fall into place is very unsettling, very hard.

This Forum is absolutely crucial to my well being, because these auto immune conditions puzzle almost everyone.

And most of the time, even with good doctors and good treatments, there are no cures or easy answers.

That said, of course, life is always a challenge and the key is to enjoy what you can, go for everything you want, really want,
and take the best care of yourself you know how to do!

If we listen closely to other people, we begin to realize that life is challenging for everyone, Tess.   

And those of us here have a full house when it comes to challenges.

I have the list of medications that I take, and the Pilocarpine helps tremendously with my mouth.

I also see my dentist three times a year, to be on the safe side.

For the aches and pains (which can be terrible) I have found great relief from:

Aleve (Naproxen Sodium) which is an OTC pain reliever.  We each have to find what works for US.  Aleve helps with my arthritis pain.
Since it can be hard on my stomach, I take Omeprazole, an RX form of Prilosec to protect my stomach

Cymbalta, which is an RX antidepressant and ALSO on label for the pain of Peripheral Neuropathy and other body pain.

Oxcarbezapine, which is, of all things, an antiseizure drug, but is also used for the pain of Peripheral neuropathy and other body pain.

With those three pain medications and Pilocarpine, eye drops (Systane) an Eye spray (Nature's Tears) a nose spray (Nasonex) to keep my nose from blocking so I won't breathe through my mouth) and a nasal saline wash, and lotions for my dry skin, I do pretty well.

I am seeing new doctors, and have some hope of perhaps trying Plaquenil, Methotrexate, or Prednisone to slow down the progression of my auto immune condition.  Those all have major side effects, which don't affect EVERYONE of course.

I have also become ALLERGIC to many medications over the years, and never know when my 'salvation' prescription or OTC medication may become impossible to take.

I'll just face each issue as it arises.

PLEASE keep us posted, Tess.

Good days, bad days, happy, angry, sad, questions, answers, whatever, this is the place to let it out.

Kisses and welcome again,

Elaine