Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: zaddruga on February 16, 2012, 08:50:36 PM

Title: Newby not sure I belong here
Post by: zaddruga on February 16, 2012, 08:50:36 PM
I have many of of the symptoms of Sjorgens but no diagnosis.  I already have a diagnosis of Rheumatoid Arthritis and I have read that it its fairly common for those with RA to develop secondary Sjorgrens.  My mother who had RA also had Sjorgens.  I have some of the symptoms of Sjorgens but not all.  I have a very dry mouth and nasal passages.  Even with the addition this year of a whole house humidifier my mouth and sinuses remain very dry.  I have chronic sinusitis and have had 3 nasal surgeries in the last 7 years.  I don't have dry eyes though so no one is willing to make the diagnosis.  But would medicine make my mouth so dry that everything makes my tongue burn, such as mild salsa or salty foods.  Sometimes my lips stick to my teeth and I can't eat bread without swallowing water right after in order to get it down. I also have really bad teeth, lots of root canals, crowns and gum disease.
Title: Re: Newby not sure I belong here
Post by: eyeamdry on February 16, 2012, 09:57:44 PM
Hi and welcome.  You will be welcome here whether you have SJS or not.  It is also impossible for us to tell whether you have Sjogrens or not.  Many people have many of the signs, but no positive bloodwork and it's a tough call.  If they can get a dr to treat the symptoms, it isn't so bad.  This is called sero-negative if the bloodwork doesn't show SJS.  That doesn't mean you don't have it though.

Your eyes are not a problem, but that is not necessarily a problem for everyone.  Also symptoms come on gradually so you may not have eye problems until later.  Dry mouth is definitely a problem.  That was one of my last symptoms and it is a bad one. There is meds you can ask your dr about for dry mouth.  If your joints are involved, there is also meds they can prescribe.  The best thing you can find is a rheumatologist who will listen to you and take you seriously.  If you don't have a rheumy yet, many GP's are helpful and knowledgable - and mine is!  You'll get more people coming on here.  The weekends are kind of slow and it's very late at night now.  Hang in there, Lucy
Title: Re: Newby not sure I belong here
Post by: mshistory on February 17, 2012, 04:22:41 AM
Welcome! Some medications can cause severe dry mouth - Cymbalta did that to me, so I would ask your rheumatologist about the particular medications you are on for your RA and any other meds you might take to see if one of those could be the culprit. But it could also be Sjogren's - like Lucy mentioned, there are medications that can help with severe dry mouth. My dry mouth isn't severe enough yet for Exovac or Salagen, but like you, I can't swallow bread without a sip of water first. I also have a history of dental problems - that's so common for those of us with SjS.

I hope you are able to find some answers and a doctor willing to take your symptoms seriously.
Title: Re: Newby not sure I belong here
Post by: Joe S. on February 17, 2012, 06:43:55 AM
Welcome zaddruga.

The basic symptoms are dry eyes, nose mouth, bum (for the non-Americans). Thrush, gingivitis, and tooth problems are common among people this ailment. It took years before a doctor said SICCA to me.

1.   Don’t Panic. Panic makes thing worse than they are or have to be.
2.   As long as you live remember to breath.
3.   Meditate “I am”, “calm” to help with pain management.
4.   Sip, Swish, and Swallow your water.
5.   Wear your “polar fleece mumps scarf” to bed.
6.   Read “Spoon Theory” to manage your symptoms.
7.   Brain Fog goes with AI diseases and there are supplements for that.

We tend to get infections in our glands and teeth. Strep is a recurring throat infection for a lot of us. Cytomegalovirus (CMV) is another common virus that we get. Some of us encounter Staph infections also.
Title: Re: Newby not sure I belong here
Post by: Bucky on February 17, 2012, 07:11:17 AM
Hi Zaddruga - welcome!

There is a wealth of information here on this site - I hope you find it helpful to you as you have several of the symptoms, but no diagnosis.

In my opinion, if your mother had Sjogren's and RA - it is a good possibility that you too would have it.  We have several members here whose mother had Sjogren's and they do too.

Do the doctors say you don't have dry eyes or do you just feel you don't have the dry eyes?  Some times we become so use to things that we don't realize how dry we are and just accept it as allergy eyes, wind, sun, etc.  The eye drops are so soothing to the eyes.

Sjogren's can do a real number to our teeth.  It was my dentist office that suggested I get tested for Sjogren's as their instruments were sticking to my cheek and teeth during an exam.  I never leave the house without a bottle of water with me.  I have to have some sort of liquid to help wash food down - breads are really tough to get down without it.

Many times, doctors look at individual symptoms and not the whole picture - which is why some members take years to get an official diagnosis.  You have to be your own health advocate. Keep pursuing it until you find a doctor who will listen to you and treat you for your symptoms. 

Your Rheumy should know that autoimmune diseases like to bring their friends ( ::)) - and given your family history, should be keeping an eye on your symptoms, etc. 

Title: Re: Newby not sure I belong here
Post by: Aquarius on February 17, 2012, 07:17:00 AM
Hi and Welcome, I don't know about the rest of your dryness symptoms, but it is not uncommon for some people to develop permanently dry nose following sinus surgery.  Sometimes the dryness doesn't show up for years after the surgery.  You commented that you have had 3 surgeries.  You might want to check out 
Title: Re: Newby not sure I belong here
Post by: susanep on February 17, 2012, 08:02:56 AM
Welcome, and I go along with what everyone said. You come back here anytime, and we are here to listen, and will be of any help we can.

susanep :) :)
Title: Re: Newby not sure I belong here
Post by: eye2dry on February 17, 2012, 11:57:41 AM
yes some medications can cause dry mouth.
antihistamines, antidepressants, name a few.

I wish I did not have the symptom of dry eyes..your lucky in that regard. my eyes are my biggest complaint I have.  then followed by fatigue and least by joint pain.

I am fairly new at this SJS, diagnosed in sept 2010. I am still learning from others on here and through my own trial and error.

Title: Re: Newby not sure I belong here
Post by: zaddruga on February 17, 2012, 06:01:27 PM
I talked to my eye doctor about the possible sjorgrens and he looked at my eyes.  So since my eyes have never been affected I always just assumed it was probably caused by a medicine.  It was my general practioner that suspected SJorgens because I have a lot of heart burn and stomach problems.  By the way could Sjorgens explain how I managed to have two infected teeth at the same time.
Title: Re: Newby not sure I belong here
Post by: eyeamdry on February 17, 2012, 08:40:51 PM
I'll take on the question about two infected teeth at the same time and it's connection to SJS possibly.

Not a dentist, not a medical, but I've had lots of infected teeth, root canals, crowns, partials, etc etc.

I had my first abscessed teeth when I was 18 years old.  The two front teeth and one to the side of one of the front teeth.  I am sure I didn't have SJS now and I'm old enough for social security.  SJS does seem to make a mess of our teeth, but many of us (me included) had bad teeth starting as children. 

Are the teeth side by side?  If so, I think the infection could easily spread to a tooth beside it.  If not and the teeth are a distance apart, well you have the infection and somehow it spreads to the other tooth.  Now, please someone knowledgeable in dentistry come and rescue me.

Welcome to Sjogrens World, Zad.  ..Lucy
Title: Re: Newby not sure I belong here
Post by: Pisces24 on February 18, 2012, 05:01:00 AM
Oh Gosh with all the "specialists" we have seen and all the different tentative diagnoises, getting a definite diagnosis of Sjogrens takes a looooooooooooog while. Lots of us here are not positively diagnosed by a dr but have ALL the symptoms. Most drs need an "Aha!" thing to hang the diagnosis on. Most dr out of textbooks in that you have to fit all the symptoms to a T for XYZ and then they will say "in my professional opinion" you have XYZ and treat you. My dad used to tell me I would never be a Good Cook if I cooked out of a textbook - and I think that applies to a lot of so called "specialists".

I am not sure what you have for bloodwork. My ANA, SS-A and SS-B are sooo high that I was positively diagnosed. Course took 6 yrs!  ::) Please remember the Sjogrens is a very individualistic disease. There are certain common symptoms but then there are others that run from mild to severe.

I feel lucky so far as I just have:  Chronic sinus infections - which nettipot nasal rinses have helped a heck of a lot, dry mouth where I get lots of teeth cavaties, dry eyes, tummy issues from taking the durn antibiotics when needed, some fatigue, and spots on my lungs that so far do not affect me. I work a full time job, with frequent overtime and live a fairly normal life except when I get hit with a "flare', flu, or whatever you call it.

I would definitely recommend anyone with Sjogrens working to have an FMLA on file at your work. I protects you and you need the protection. I got the contagious H1N1 and work threatened me a reprimand if I didn't come in. My dr was so PO'd he insisted on the FMLA.

Welcome to the group! Good luck in your search for intelligent life forms in doctors!  ;)
Title: Re: Newby not sure I belong here
Post by: zaddruga on February 18, 2012, 09:24:56 AM
The two teeth were parallel to each other.  One on my bottom jaw and the tooth above it on my upper jaw.  I have had bad teeth since childhood.  I got my first infected tooth at the age of 14.  I used to average 6 cavities a year, now its 2.  I don't currently work outside the home.  I have two children who are twins.  They are a boy and girl 8 years old.  One has severe autism, the other one the girl has ADHD and I home school her.  She is really bright but has all of the focus issues related ADHD.  I have already received a diagnosis of Rheumatoid Arthritis and had lots of blood work done.  Don't remember the details anymore but I do remember that the RA factor was very high.  I take Enbrel for my RA.
Title: Re: Newby not sure I belong here
Post by: Patze on February 18, 2012, 03:26:49 PM
Hi zaddruga,

Let me also welcome you to the SJS World and family!  As the others have mentioned is please do look around when you have some time as you'll find scads of information to a lot of questions that you may have.

I'm sorry to have to meet you this way, but I'm sure glad that you've found us!

Again, welcome and I hope that you find this board as warm and inviting as I have all these years later.

Take care of yourself -