Hi =], I'm new here and have a few questions!

[Shani]

Hi everyone! I'm a 16 year old teenage girl that lives in the small country called Belgium.I recently have been diagnosed (less than 2 weeks ago) with SLE (Lupus) and about two days ago Ssj.I have a lot of symptoms and pain, as they have called me crazy for two years saying nothing was wrong..and now all of this happens.So I've got a few questions, hoping that you sweet people can help me out.=]

-My body decided to attack my Thryoid gland, I'm going to an Endocrinologist next week.My Rheumatologist has given me the blood results about changes with Thyroid and such.What should I expect when I go visit my Endocrinologist?(Like tests and what do they do.)

-My tongue looks really white/coloured and dry, it often feels weird like there's sand on it and it burns when eating hot soup or something too spicy, salt , orange juice and so on or sometimes just randomly.Is there any specific doctor that is like specilised in such issues?Or should I wait untill my appointment by the rheumatologist again as I need to bring all the test results with me.(The saliva gland scan has proven that it's really dry, that's how they diagnosed me with Ssj aswell.)

-On my kidney echography they have found some kind of little cysts(I think it's called like that) can the Lupus cause that?(She said it might have to watched every once and then with an echography.Aswell, is this something to be worried about/or concerning?


Lots of love!<3
-Shani

[Pisces24]

Welcome to the reluctant member's club of Sjogrens.  With most people on the board here it has taken a considerable amount of time and doctors to get diagnosed.  It took me 6 years and though no dr told me I was crazy I heard everythings to "probably something she got from her cat"  to  " some type of cancer lymphoma but we can't tell what. I assume your ANA which tells you have some sort of autoimmune disease was high? I know mine is 2,000+. I just had blood tests that pinpointed my SJS and my #s were soo high there was no doubt.

The thyroid gland when out of wack can cause a host of problems. Mine was underactive so I had dry skin & hair, paleness, out of wack periods, fatigue and more sensitivity to the cold. I ended up in the hospital before they figured out it was my thyroid and my reflexes were pretty bad. Dr hit my knee with the hammer and it took 10-20 seconds for my body to react.    The TSH test tests your thyroid. It is easily managed with a pill every day and every 6-12 mos a blood test to check levels.

I don't know about the kidneys or the tongue so I'll leave that to the other folks here. I know SJS can affect other parts of the body.  I can't wear contacts due to dry eyes.
Oh and get use to being monitored. The drs are watching to see if something develops and to catch it early on. This probably sounds scarey but it is a good idea.

My advice is to be proactive with your doctors. Ask questions. I used to think drs knew everything but after this I know they do not. There are good drs who will dig for the answers and there are the ones that if you don't fit a textbook diagnosis they don't want to do any work to find the problem. I go to what is called a teaching hospital here in Iowa. I get the head dr and 1-2 interns. The head dr always askes the interns questions as to what would you do, this test result points to, etc etc. So they ENCOURAGE the reaserch to find the answer to problems and have good patient relations.

Also, don't live your life worrying about medical issue is coming up next. Enjoy it. Sorry you have to deal with these medical issues at an early age!  My folks were disabled when I was younger than you so I had to grow up a little faster too.

Good Luck and keep us all posted on how you are doing and coming along

[Shani]

Thank you so much for your help!=]
About the ANA, yes it was very high.And my Thryoid is rather overactive.Causes aswell extreme fatigue and other issues, and I'm glad that it's nothing scary.=]I'm quite tired of all those scans.I already had my guesses about the monotoring, but oh well anything to make sure that nothing risky happens.

Aswell, I'm trying to think positive.And especially not worry about it yet, as I have a few more doctors to visit/results to wait on.So I rather accept it all at once, when I know what it has affected and so on.And I'll make sure to make updates every once and then.

Lots of love.<3
-Shani

[Scottietottie]

Hi Shani 

Welcome to Sjogren's world. I'm so sorry you've developed Sjogren's at such a young age! Lupus can certainly cause kidney problems. I'm not medical so I don't know much about it but I've definitely read it can affect them.

An endocrinologist will ask a load of questions, probably take some blood, will examine your neck and may order an ultrasound exam for it. They will probably prescribe medication too.

It's not unusual to have more than one autimmune disease. They seem to travel in packs! I have an underactive thyroid so I'm more familiar with the medication given for it.

I hope you find the site useful.

Take care - Scottie 

[lynnmarie219]

Hi Shani and welcome!

It sounds like you are on the right path with your rheumy and by going to the endo next week.

I would write down all of your questions/concerns when you go to any appt...that way you will be sure not to forget anything important during the time you are in with the doctor. I know if I don't write it down...I forget some of the things I want to bring up.

If you discuss your tongue or any other issues with your rheum...they will either be able to test and offer suggestions/treatment or refer you on to another "ologist". Unfortunately we seem to collect a team of doctors as they all seem to specialize so much now...which I guess is good for us!

Good luck to you and keep us posted....so sorry you have to deal with all of this at such a young age.

[Shani]

Thank you for your help, ScottieTottie.=]
I'm not so scared about going to the Endocrinologist now.

And thank you too, LynnMarie.
-That's a useful tip aswell, I always seem to forget to say something, even if it's something little but still important.=P
I'll make sure to tell my Rheumy about my tongue issues, next time.

And yes, it's not relly amusing to have this at a young age, but I've started to get used to the pain and all of the issues.
So hopefully I'll be able to give it a place in my life, although it will be slightly different than I was expecting.And thank you.

Lots of love<3
-Shani

[Joe S.]

Hi Shani, I am sorry to have to welcome some one so young to this forum. It sounds as if you are on the right path for traditional treatments. Since everyone is different it is important to find what works for you. Use your search engine (google?) to check out the medications that some of us post in our signatures.

I am sensitive to most traditional medical treatments for illnesses. I have chosen alternative treatments. For pain I use meditation, body reflexology, acupressure, and Reiki.

[Carolina]

Dear Shani,


Welcome to Team Sjogren's, and to the larger fellowship of people with auto immune conditions (plagues, diseases, and assorted horrors).

Here you will find lots of support, great information, and a chance to share what's on your mind and in your heart.

I do hope you find some relief from the pain.  For many of us it takes some time to work with doctors and on our own to find the right combination of treatments and medication.  But often the pain can be relieved, if not eliminated.

Also, some help for your fatigue and depression are available.  All of these auto immune diseases have depression and fatigue as symptoms of the disease.  PART of the disease is fatigue and depression.   And those symptoms must be treated just like the pain and other parts of the disease.

We truly understand what you are going through.  Some of us haven't shared everything, but here you will always find someone who knows what your specific issues are.

Welcome!

Keep us posted on your progress.

Kisses

Carolina

[Shani]

Thank you Joe.
-Google is my second friend, lol.=]I've used it to search Plaquenil.(CurrentlY a dose of 200 twice a day with Omeprazole and Mobic added to it.) I sadly have a really weak stomach, so I've had to change medication often like ibuprofen-something else- and now one Mobic a day, in two halves though.I'm hoping Plaquenil will help for me but my Rheumy has mentioned cortisones.He'd rather avoid it though.In August I have to go back to my Rheumy, which makes it two months of trying Plaquenil.So hopefully there will be some improvements made.

Thanks Carolina!
-And yes fatigue is a big issue by me, it started with that even when I didn't have symptoms or any other issues.My own doctor (not Rheumy) has mentioned that it could be chronic fatigue.But I'm starting physical therapy soon, 3 times a week.So hopefully it will make a few improvements aswell, same with the pain.

Thanks both for the warm welcoming aswell.=]

Lots of love<3
-Shani

[Patze]

Hi Shani,

Let me also welcome you to the SJS World and family!  I'm so sorry that you've developed SJS and Lupus, and I hope that your doctors stay on top of things for you!

Please do look around the board as there are tons of topics that just might interest you, and oodles of information here that I often come here to look up things as the rheumy I see is a quiet kind of doctor.

Hugs to you, and I hope that you start to feel better soon!

Take care of yourself -

Patze

[Shani]

Thank you Patze!Hugs back.=)

Lots of love<3
-Shani

[LizPetillo]

You've been told your fine or crazy .... me too.  They still say it.  ugh.

I'm interested in what you said about your tongue.  Mine is WHITE/GREY, cracked, painful, burning, and it swells and unswells.  Every doctor I've been to says either 'you are fine, take an anxiety pill' or 'I don't know'.  It's been like this since April 17. 

If you find out about your tongue please please please let me know.
If I find out about mine .. I'll let YOU know as well.

Prenesone helps it not to swell as much and it tones down the burning.  My thought is that my body is trying to kill my tongue along with the glands ... but I can't find a doctor who knows what is going on or who wants to take the time to figure it out.

[Shani]

LizPetillo, I know!Same things here going on with my tongue, i forgot to put the swelling.It swells up so often, it's really annoying.I'll let you know if I get any answers.As maybe it's a small thing, but I'd rather have a problem/issue less.So it's important too.

Lots of love<3
-Shani