new here

[Shela50]

Hi My name is sheila I am hoping told  correspond with some folks that suffer with same things that I do. if there's anyone out there I would like to chat I would be very grateful.

[MissyLouWho?]

Hello Sheila and welcome!  I'm Melissa. I only joined about a week or so ago but have found it to be friendly and comforting here.  Everyone is very knowledgeable too.  Hope you like it here as much as we do!

[smallfry]

Hi Shela

Welcome I am always in for a chat and a cuppa!

http://www.sjogrensworld.org/chats.htm


Cheryl

[Shela50]

Thank you for the warm welcome. I, like many of you, have been on a journey with Sjogrens. I have been through the diagnotics procedures being done at John Hopkins at Baltimore. I entered in a study for Sjogrenss. They are brillant people.
I changed jobs taking a huge pay cut and changed many things Icould to help reduce stress and symptoms.
I managed for a few months to have minimal discomfort.
In the last week I have been in a full blown episode. Dry mouth, worse than ever before, dry eyes, finger tips peeling....swollen in the joints so its hard to move....I almost was making myself beleive that maybe they were wrong about having Sjogrens....but they aren't.
I do want to share that by changing some things within my control it did help. I am hopeful now to know that coming here means I am not alone. The ever retoracle question: why do we have to go through so much to get a diagnosis. My journey took 3 years....I hope you will share your journey with me. Perhaps something I have said could help you....
Have a great day....

[smallfry]

Shelia

I am so very sorry that you are having such a rough time at the moment, It really hurts me to hear of people like yourself having to go through so much to get an answere to all of your suffering.

I first noticed symptoms 15 years ago but as they were very very mild I just shrugged it off until 4 years ago the symptoms worsened I was then diagnosed with positive bloods, about 12 months later it took a turn for the worse and I am now on plaquenil. Like everyone here I have a long list of complaints from my sjs etc and I have my good as well as my bad days I try and stay as positive as I can.

I suffer from Sjogrens, Raynard's, complex migraines,reflux total L4/L5 disc replacement.

You will find a lot of very friendly and very helpful people here,and you will never feel alone when you come to sjogrens world.like I always say this is my refuge.

Lovely meeting you
Take Care
Cheryl

[Joe S.]

Welcome Shela50.

[Duchess]

Hi Shela50,

Welcome to the forum with open arms. No, you are not alone. We are here to embrace each other. We share information with each other in hopes of helping one another.

3 years is a lone time to get a diagnosis. It is reported that the average is 7-8 years. As Cheryl stated, she noticed symptoms 15 years before she was diagnosed.
That is not uncommon. Sometimes we feel things and just shrug it off. Then , when we tell our doctors, we get all sorts of replies and reaction. There are docs that have never heard of the disease. There are some that tell us it is all in our heads. Then, we as patients don't always tell one doc what we have told another. For instance, I have been having multiple dental procedures by different dentist  since the 1980's. None of them even thought it might be due to SJS. I never told my primary doc what was going on at the dentist and on and on.

There are some docs that may pick up on it sooner rather than later. Test results are not always conclusive. You could have SJS and your labs are negative.

Those are some of the reasons why it takes so long to diagnose SJS.

Once again WELCOME! Have a great day!


Duchess