What on Earth is this "Thing" for a Diagnosis?

[beej]

OK, it's been about 5 hours now and here I've found my way to an online forum.  I never heard of Sj?gren?s syndrome in my life and that is a slick trick to play on me since I met with the doctor to "discuss my findings".  I am a special ed teacher and specialize in teaching about ADA, disabilities and assistive technology.  So, this is a rare time to hear of a strange disease and not have heard of it.  Until my doctor told me I had it, this afternoon.

I've read some of the new posts and topics and see that many posts are from people with very specific symptons, yet I don't feel much different at all.  I just started having lots of problems with sleeping and fatigue and general symptoms needing months and several doctors to sort through in testing.  So, (I) am told that right now, though (I) feel fine, (I) have this "thing" for a diagnosis and "within 2 - 3 years (I) will start having serious medical issues involving my major organs" and I will be in serious trouble.  What the heck?  Seriously, are other folks told something like this for a diagnosis when it is "out of the blue", no particular serious issues at present?  I have had two complete lab reports from two different labs come back with this latest result and diagnosis.  Since they were 4 months apart, this extended labwork was even more adamant I have Sj?gren?s syndrome and lupus, by the lab numbers.

At least I know that I will really not know much for a while and have to get a rheumatologist, and that may take 2 to 3 months according to my doctor.  But seriously, do other people get told something like this and like me, have never heard of this?  I will calm down in a few days likely, but at present, I am at least very relieved to find this posting forum and plan to be a good listener for a while.

[beej]

Oh!  Forgot to mention, how the heck will I learn how to say the name Sj?gren?  online I found something like shay-gren.  I am from the Chicago, Illinois area originally, so considering my Midwest accent, could someone please try to give me a clue how to say it?  Appreciate any help for this new newbie.

[irish]

You betcha!!!!!! The thing that is different with you is that the doctor knows what he is dealing with and able to look ahead.A good many of the doctors don't have a clue for some reason. This is a "rare" disease but at the same time there are more and more people being diagnosed with this every year.

I studied about Sjogrens when I was in nurses training but the books only talked about the dry mouth and dry eyes and body aches. Didn't make it sound like much of anything. So many of the doctors seem to know about this much. This disease has been written about in a fair number of the women's magazines the past couple of years but if you missed the article you would never know about it.

Sjogrens is a second cousin to lupus and the 2 diseases can be hard to tell apart sometimes. Also multiple sclerosis and sjogrens have some symptoms that have very similar symptoms. This makes it very hard for the doctors to identify.

I am assuming that you got a fairly quick diagnosis and most likely had positive blood work of some kind. So many of us have doctored for years and had negative blood work so no diagnosis. I had problems with sjogrens and about 4 other autoimmune diseases for about 40 years before I got diagnosed.

It will be interesting to see what your doctor will do. The medical profession has been very slow to treat sjogrens but they are now learning to be aggressive to prevent the autoimmune issues from being so bad. The drug of choice for initial treatment is Plaquenil and usually accompanied by prednisone. The fact that you have no pain(am I right about that??) makes me wonder when the doctor will decided that you need to start treatment.

Come and visit often and read all you can on this site. I would also go to the home page and click on "articles" and read all those so that you have an idea about various angles of this disease. Remember that your attitude is the most important thing. This disease will not kill you dead but it can be an interesting ride. Some people have a mild case and others havae quite a few symptoms. Just roll with the stuff that comes your way and keep smiling. We sjoggies are a tough bunch. Take care and keep us posted. Irish

It is pronounced shogrens---not all that hard but is harder to spell.  I don't know if you understand what is going on with your body, but sjogrens is an autommune disease. An autoimmune disease occurs when our immune systems get their wires crossed so to speak and try to kill off our own tissues. Generally the immune system is to kill off bacteria/viruses,etc. The body produces a large amont of white cells or inflammation in the course of trying to kill off the secreting glands of our body. Generally the eyes and mouth (salivary glands) are the first parts of the body affected---at least according to the book. The fatigue is also very common.

The mucus producing glands of the stomach and intestines can also be affected as can the pancreas, liver, urethra (tube from urinary bladder to the outside of body) and also the vagina. I am sure that I forgot something but someone else will come along and fill in the blanks.

You have entered new territory and the people on this board will become your best friends and allies. You can come here for information and to vent if you feel the need. We don't have to live with each other so we can really take a lot and give a lot of sympathy.

[smallhours]

Welcome aboard!  I don't post a lot, but I have learned so much from this board.  I agree with Irish that using the search box to read previous posts in very beneficial.  BTW...I pronounce it like this....Showgrin's.  Good luck to you on this interesting ride called Sjogren's.

Kat

[Poochie]

Hi Beej,
Welcome to the family.   There isn't much I can add to what Irish has told you, except Sjogren's is pronouced like "Show grin".  I hope this helps you, accent or no accent.

Again welcome, and don't be afraid to ask those questions you can't find answers to.

Pooh

[Joy Cox]

You can find a different approach to infomation on Ntl. Sjogren's Foundation at Sjogrens.org. Welcome to Sjoggie's World.

[TerriF]

Hi Beej,

I am like you, as in I never heard of Sjogrens before. I went to the dr. with some joint pain, I had been having other issues but never put them together and was given my diagnosis in no time at all.

[Patze]

Hi Beej,

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

The other posters have given you some great information, and don't be bashful if you have any questions as there is usually someone about that might be able to help.

Again, welcome, and take care of yourself -


Patze

[warmwaters]

Sorry to hear that you got this surprising news. It's going to take some time to adjust, but the good news is that because the doctors identified this so early on, they can try some things that may slow the progression of the problems. It also sounds like you've got some decent doctors if they chased this and identified it. Many people have the experience of not feeling well for years and can't get a doctor to take them seriously.

Understand that there's a broad range of symptoms, ranging from minor and inconvenient to very serious. There's no "typical", which is why on this forum you see people comparing what they are experiencing, and how to deal with it.

Since you have also been diagnosed with lupus, check out www.lupus.org. They have many resources there, including local support groups. Even thought I don't have lupus, since there are lot of similarities between the automimmune diseases, I track what's going on there to see what current thinking is.

And a funny story about how to say it. When my doctor first told me what  I had, I thought she said "Shogun", like the old tv mini-series about Japan. Spent time googling it, and kept getting articles about samurai! Once I sorted that out, found this very supportive site.

[beej]

Wow, thank you to all who replied!  I've been a heavy online person for about 10 years, but I was quite surprised to find a forum for such a condition, let alone an active one!  What a blessing, thanks to all.

I've been having odd symptoms for about a year and went through everything testing, for headaches, neurology, allergy, depression and even had a back injury this last summer.  It was a mystery as to what caused the fatigue and headaches, so the testing went on an on, ruling out most everything.  Ironically it was a dermatologist who first found the blood work issue pointing to lupus and Vitamin D as a severe deficiency.  So my family doctor requested a very very complete set of labs.  This second set came back even stronger, with a definite lupus and sjogrens result.  Now I have to see a rheumatologist and am told it can be months before getting in.

My biggest problem is that my insurance ends in two weeks.  I work for a small employer who may not be able to find another insurer.  The current one decided to drop HMO plans and not offer a replacement.  My company has not found another insurer willing to offer a plan at all, but found only one, who would triple the company expense.  My worry is that if I lose insurance OR if a "new" insurance treats this situation as a pre-existing condition, I will not get health insurance for it.  My doctor told me that if I go without insurance I will never get insurance again because of this specific disease.  So,  you can imagine I will do much studying and pro-active things as possible in the next two weeks while I have insurance.  Hard to comprehend all this.  Yes, I will most definitely be a search fiend on this forum and appreciate those who share and care.  Bless you!

[Cheryl]

Beej,
  Welcome to our site.   I would only like to add that your doctor probably scared you unnecessarily by telling you that you would have major organ involvement and serious trouble in a couple of years.   Sjogren's doesn't affect everyone the same way.  Many of the members here have only a few symptoms that don't seem to worsen over time, so don't assume the worst.   
  Best wishes for a long healthy life!
Cheryl

[Redetha1]

Welcome to the site.  This is a great place for info as well as a place to vent when you need to.  No one will be critical of any thing that you write.  Welcome to the Sjogren's family...even though it may not be where you want to be.  Ask questions and read posts.  Its a big help.

[meow]

Regarding your insurance:  make SURE your insurance company provides you with a "certificate of insurability." When companies change insurance or drop it, this magic piece of paper will keep the new insurers from excluding almost any condition, pre-existing or not.

They give these to EVERYONE when there is total change like this. You will want to make copies of it.

[YYC_ Mommy]

Welcome! I too had never heard about Sjogren's prior to being diagnosed with it. This place is just wonderful, you have so many people here that know and understand what you are going through.

[Pisces24]

Gosh I really need to borrow that crystal ball from the dr who predicted serious medical issues down the road. If he/she was just telling you the worse case scenarios - we really don't need any help on that issue. Our imaginations do just fine thank you.         Like the others are telling you, the symptoms are different for everyone and so is the progression. You could stay the way you are for years and years  or progress to worse ones in a couple months. Look at it this way, nobody really knows what tomorrow will bring - it is just us folks with "stuff" that the reality of it smacks us.

My bloodwork #s stared climbing about 1998, 2003 my gp started me on the specialists rounds and finally in March 2009 I got diagnosed with Sjogrens.  I never heard of it either!  You learn fast that drs don't know everything!  I really felt fine but all the drs I saw were telling me I was not - that will scare the heck out of you especially when they mention the Big C word!  My symptoms are:  lotsa teeth cavaties, Odd bloodwork #s, easily gotten sinus/throat infections (sinus flushes & humidifier has really helped that) , dry lower lip, off & on allergy eyes, some skin dryness espec feet and some fatigue. I've had Hashimotos for years and Reynards in 2 fingers for about 10 yrs. That is it so far.

I went through the "acceptance phase" long ago.  You just eventually get tired of letting the drs "pull your emotional strings"  learn to take it one day, one test or one week at a time - whatever you can handle.
Good Luck!