Newbie looking for some help.

[MMCG]

Hello there, I have looked on this site many times in the last eighteen months but never joined before.  I was admitted to hospital Christmas 2007 with varied symptoms which were:- high temperature, severe pain in upper right abdomen, joint pain, fatigue, dry eyes and mouth.  My doctor suspected Gall Bladder problems.  I had lots of tests in hospital which included and ultrasound and MRI scan.  The only thing that showed up then was a simple cyst on the liver.  They discharged me three days later and I have since seen a Reumatologist.  I have high liver enzymes from time to time, slightly anaemic but nothing dramatic showing in my blood.  I was referred to the Dry Eye clinic, and the nurse in charge asked me if I had been diagnosed with Sjogrens.  I was forced to go back to the Doctor today because my salivary glands have swollen up.  Along with all my other symptoms, dizziness and sickness have come along too.  My Doc is now referring me again to the Reumatologist and let slip that he thought that the swollen glands were all part of the 'syndrome'.  When I asked if it was Sjogrens, he said that in his opinion it was, but nothing definite is showing in my blood.  I also have Hypothyroidism and Reynauds.  Can anyone offer any opinion, as I am frightened that I have Sjogrens and also that it is effecting my liver.  I would be glad of any help, as I am feeling pretty low just now.  Oh, I forgot to mention that I have just had a couple of weeks with mouth ulcers and cold sores.  Thank you in anticipation.

[jonnell]

Welcome to the forum.  My name is Jonnell and my 4 year old has sjs.  You definitely have a lot of the symptoms Have you have your ana tested and test for ssa or ssb?  You will find a lot of people here who can answer your questions it is like one big family.  Welcome and try to stay strong we are all here for you.

[JannaLee]

Hi MMCG,

Your symptoms certainly hit the Sjogren's bullseye.  I encourage you to be demanding in terms of Rheumatologist.  They are a varied lot (as are all of us) with some who will diagnose/treat on symptoms and some who won't.

Possible liver damage (for any reason) is nothing to sneeze at and since your labs looked okay if yours is in peril it's still in the early stages when intervention could be successful.

Welcome to the group, I look forward to knowing you better.

Janna

[MMCG]

Hi Jonnell and JannaLee, thank you for your replies.  The only things that showed in my blood work were elevated liver enzymes and slight aenemia.  The doctor told me that it can take a while for any of the Autoimmune diseases to show in the blood.  Meantime the biggest worry is the pain in my upper right abdomen, but I can only wait for another referral to the Rheumatologist.  Everything seems to take its time, when I am anxious for answers just now.  By the way, I am a 54 year old married woman.  I am a mother and also a Foster Carer, and I pray for a little more energy to continue in my work.  Thanks again. 

[Chickpea]

Hi MMCG

Welcome and I'm glad you found us.  You're bound to be feeling pretty low at the moment and overwhelmed by everything that's happening to you.  It sounds as though you have a busy and worthwhile life, and I can well understand that you want to keep going with all the important things that you do.

You'll discover from the message boards that a high proportion of Sjoggies have lots of symptoms but negative blood results, so you're not alone in that.  I think Janna's right that you need to find a really experienced Rheumatologist who will treat your symptoms, and investigate the liver involvement and the other abdominal issues.  It's worthwhile searching the message boards for posts about your specific issues and finding out which questions you need to ask your doctors.

I've been anaemic for years and I also have similar upper abdominal pain: ultrasound scan on Monday to investigate further.  Do you find that sleeping with lots of pillows helps?  Has your appetite been affected, or the amount of fats you can tolerate?

Everything takes a lot of time with AIs, but helping you through that waiting period is what we're here for!  Come visit when you're feeling low, have questions and queries, or when your days are going well and you're able to cheer other people up.

Take care - Chickpea

[Linda196]

Hello and welcome, MMCG.

One thing in your favor is that your rheumy seems to understand the possibility of "the syndrome" without the positive blood work, and that it could take time for positive results to show up in your blood. Your next mission is to make sure he will treat you, even before the tests show positive.

In regard to elevated liver enzymes and abdominal pain, have you been referred to a gastroenterologist? No matter what the cause of those symptoms, that's the speciality to investigate it. There are autoimmune conditions that, with or without the presence of SjS, can cause liver problems and need to be checked out thouroughly.

Keep reading here, you'll be sure to find some information that applies to you, lots of support, and some new (and understanding) friends.

[Scottietottie]

Hi MMCG     

Welcome to Sjogren's world. I can't add a lot to what the others have said.

I hope you find the site useful.

Take care - Scottie     

[Patze]

Hi MMCG,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of information that you might find interesting.

I can't speak of liver enzymes, as mine have been normal so far, but I sure can understand anemia, had it pretty much throughout my childhood, and I refuse to ever take the "iron" pills ever again - they were the worst (gag)!

Like several other members, I too have Hashimoto's and Raynaud's so I understand what your going through; it's so frustrating trying to figure out what symptom goes with what and always wondering if something new is developing.

Hang in there, and take care -

Patze

[MMCG]

Hi there and thanks to everyone for the encouragement and advice.  Its nice to know you are not alone with all the symtoms, but not so nice that a lot of folks are suffering with these similar problems.  I cant even relax with a glass of wine now, as I'm afraid with the liver problems.  I'm still here though and have good periods with lesser symptoms, so I guess thats luckier than some.  Take care and kind regards.  Mary.

[harrigan]

Good to 'meet' you Mary, though sorry you have the syptoms that sent you looking for this site.  I was diagnosed 4 weeks ago and have found out all the info I need to know from my new friends here.  My Rheumy is monosyllabic, though his nurse was helpful.  Good luck and remember to ask - there is always someone who can help.  XX Ailsa

[lynnmarie219]

Hi Mary and welcome to Sjogrens World....I'm glad that you found us and feel comfortable here already!

I also have slightly elevated liver enzymes and my docs have been monitoring them for awhile now.....since they haven't jumped any higher (and at times fall lower) we just check them on a regular basis. My rheumy feels that it is because of some of the meds that I currently take. I'm due for another set of labs in June, so we will see if anything has changed then!

Read all that you want to or are able to here.....there is so much information to be taken in! Good luck with your next Rheumy appt. I hope you get some answers or at least find the type of doc willing to treat symptoms that you may have at any given time! Let us know how it goes and how you are doing in the meantime.

[phatdawg]

I'm sorry to hear of all your troubles.  I too suffered for years before a name was given to my illness.  It was at the request of my very persistent rheum that I allowed an ENT to do a lip biopsy because my blood never showed Sjogrens (still hasn't).  I've been diagnosed now for 3 years but have been ill for 6.  I really think you need to demand a lip biopsy but please know it's very painful (I thought it was  worth my peace).  As far as the dizzy and nausea, my digestive system is involved with my sjogren's so you may want to go to a gastro doctor as well!  There is something called Celiac that a lot of Sjogrens suffer from and gastroparesis.

Good Luck!

[MMCG]

Hi, and thank you all for your kind words and advice.  I am hoping that next blood work will show up something, then I can get some treatment.  Thank you all, and kind regards.  Mary.

[Babs659]

Hi.  I don't have liver problems, but I also have Hashimoto's and Raynaud's, slight anemia AND nausea and dizzyness.  I have seen a gastro and all scans and bloodwork have come back normal.  The rheumy thinks the dizzyness and flu-like feeling is fatigue from Sjs.  Hope you feel better soon

[Pooh]

Hi Mary,
Welcome to our family.  I hope you find some help and lots of answers along the way.  If there is anything you need to know, we will try to answer for you. 

You might also like to read something pertaining to this disease that will also be helpful.  I would reccommend at least 2 books that are great for information: 

The Sjogren's Syndrome Handbook by Daniel J. Wallace, M.D.  and A Body Out of Balance by Ruth Fremes,M.A. and Nacy Carteron, M.D., FACR

Both of these books are just packed with very good information of all types and easy to understand.

Again Welcome, please come often.

Pooh