Just like to say Hello.

[cremer]

Firstly I hope you all enjoyed your christmas and hopefully next year will be better then the last.

I've got a few questions I need to ask but will do that in the discussion forum this is just to say hello and tell you a bit about myself.

I'm a 43 year old male living in the UK.

I was dx with Primary Sjogrens Syndrome in March this year after testing positive for SSa and SSb, I also had a speckled ANA of 1:640.

Loads of symptoms but surprisingly no dry eyes and only a little dry mouth at night time. But i do have severe fatigue, aching joints, tingling and numbness in fingers,
flashing lights in eyes, mouth ulcers and headaches.

I also have very bad digestive disorders and heart disease. I'm having to undergo a triple heart bypass in January 2011.

Anyway thats it for now and thankyou for listening.

[CAT1962]

Hi, Cremer,

Welcome to the best SJS board on the web! I was dx  about a week and a half ago or so. I knew I had something weird going on for several years, but my old doctor would tell me, "Well, it's probably arthritis...you are getting older." (I am 48!), or "Here's some cream for the horribly dry skin." sheesh. I asked to be tested for autoimmune, but he just kind of laughed at me. I switched doctors and all I had to say was FATIGUE, and here I am. Primary Sjogren's. My mouth gets dry when I talk too much  , or at night, and occasionally during the day. My eyes feel "sticky", irritated a lot. I still have tears, no problem.

I see a Chiropractor who is really into homeopathics, and I did a saliva/urine test yesterday to check amino acids and cortisol levels. WOW, the saliva part was tough...lol...I will have those results in about 2 weeks.

Anyway, welcome. This is a great group of people.

CAT

[Katybarstool]

Hi Cremer

Welcome to the family. I'm in the UK too - we have quite a number of people from different parts of the UK on our list.

It sounds like you have had a tough time, but you are in the right place now for advice, information, empathy, and lots of laughs.

Looking forward to getting to know you.

Kathyx

[Joe S.]

Welcome Cremer. The bypass in the US has become fairly routine. My Daughter had heart surgery to close a 4 cm hole in her heart. The thing that she appreciated most was a severely over stuffed heart shaped pillow. She would hold the pillow to her chest when she had to cough after surgery. It is something you may want to find or have made before you go in if they are going to open your chest.

Take care of yourself. Enjoy not having severe dry mouth and eyes.

[Scottietottie]

Hi Cremer 

Welcome to Sjogren's world. Sjogren's is a very individual disease and there is no specific order for people to develop symptoms in. There are a range of symptoms. Some seem to develop all - and others just a few - and there are differences in severity too. It's totally unpredictable. Have your doctors said whether they think your heart disease is linked to SjS or not - or is it a separate issue?

I'm in the UK as well. If you ever want to 'chat' in real time there is a hosted chat from this site on Wednesday evenings at 7p.m. GMT. So saying - hosts are now on holiday until the 5th January but will resume hosted chats then.

I hope you find the site useful and that you get your operation soon and can start the healing process.

Take care - Scottie 

[cremer]

Thank you for all your welcome replies.

It is really nice to have a place to air your views or worries.

Scottie this is one of the questions I'm going to ask. I know SS can be linked to organs but I want someone with experience in this field to explain if it's possible.
I was thinking vasulitis might be the cause. But I'll post a question in the discussion board when I get a little time to do so.

Mick

[tomsmom]

Hi Cremer,
I'm sorry you're having such horrible complications.  I hadn't heard of artery blockage due to Sjogren's but that certainly doesn't mean it can't happen. 
I saw where you posted on the Discussion Board that you don't have a history of smoking, excessive drinking and that you eat well.  How is your cholesterol level?  I do believe that cholesterol can be influenced by autoimmune issues.
I hope that your surgery goes well and that you find Sjogren's World as helpful as I have.
Take Care!

[mink]

Welcome cremer,
   I'm no expert , but from what i see and here it does hit major organs sometimes, in my case my lungs and intestines.


Good luck to you

[Scottietottie]

Hi Mick 

I'm no doctor but I know there are others in here who suffer from vasculitis. The trouble is that AI diseases seem to travel in packs - so whether vasculitis is caused by SjS or whether it is a companion AI disease is difficult to say. Someone in here may know though!

Take care - Scottie 

[dainbramage]

On my first appointment with my rheumy, I told her my symptoms.  She just nodded and wrote things down.  She was still trying figure me out when all of a sudden I told her about something that occurred when I was 24.  I worked night shift in the hospital and all of a sudden I had tiny bruising on my legs.  They were not painful, but the skin felt tight.  I showed the doctors, PAs and ARNPs my legs and they were confused.  One doctor sent me to an Internist.  I was surrounded by other doctors trying to figure out what was going on.  I was started on high dose steroids.  They called this vasculitis.  I looked it up in the medical books.(never heard of the internet at that time) There was not much info about vasculitis.  My legs, arms and belly had these small bruises.  Finally, 2 years later it disappeared. (Found out I had IBS later) Drs told me it would come and go.  My first child was born and vaculitis showed up again.  Second child and once again vaculitis showed up.  When my rheumy heard this, she immediately said....Sjogren's.  That was 20 years ago and I just got diagnosed 3 years ago. Unbelievable.

[Carolina]

Welcome Cremer,

Lots of people don't get the dry eye/dry mouth.

I started with that, well that was the first thing that I noticed that caused my Rheumatologist to call my condition Sjogren's.

But I'm always sero negative, so get no respect!

However, coronary artery disease is caused by blockages and deposits which are caused by INFLAMMATION.  So it stands to reason that Sjogren's can contribute.

Everything is connected, In My Humble Opinion.

I hope your bypass goes well.   Most of them do.   It's amazing what they can do, and how resilient we can be.

I had triple angioplasties and two stents, about 11 years ago.   The cardiologist was saving bypass surgery 'for later'

Later hasn't come yet.  But........who knows.

keep us posted on your surgery and your progress.

Kisses and welcome AGAIN!

Elaine

[lynnmarie219]

Hi Cremer,

I'm a little late here, but I just want to welcome you to Sjogrens World....I hope you find the information and support here that you are looking for!