Glad to find you.

[Soozel]

Finally diagnosed with SjS after many years of problems and diagnosis all over the board and back again.  It is so good to find others .... Thanks for being here.
Soozel

[Katybarstool]

Hi Soozel

Welcome to the family! You have joined a wonderful group of people, who will offer you advice, empathy, and a few laughs along the way.

I look forward to getting to know you.

Kathyx

[lynnmarie219]

Hi Soozel and Welcome to Sjogrens World...I'm glad that you found us!

Being newly diagnosed you probably have many questions and concerns....feel free to read through all of the posts here that interest you and if you cant find what you are looking for....go ahead and ask...someone always comes along who may be able to shed a little light on your concerns! 


Along the way you will also meet so many kind and knowledgeable people here from all over the world...lots of support, caring, and friendship!

Welcome!

[Linda196]

Hi and welcome, Soozel, we're glad you've found us, too!

As you get more comfortable with us, maybe you'd like to tell us a bit more about yourself, your journey to diagnosis, and how you cope with our common "gift" of Sjogren's!

[Bucky]

Welcome Soozel -  you will find oodles of information here.  Everyone here is different in their Sjogren's journey  . . yet, we are all alike.  Feel free to browse thru older posts  . . . . . warning, you could be here for DAYS reading!!    LOL 

Bucky

[Soozel]

Thank you all for the welcome.
My main problem has been GI.  Maybe exacerbated by the Plaquenil. 
And fatigue.  Have been trying to find answers to my problems for at least 9 years. 
Lots of wrong Dx. 
Does anyone else have painful esphogial spasms and if so how are your physicians Tx.  My Rheumy says it has nothing to do with the SjS but all the studies I read say it does. 
Thank you again for the kind welcome. 
Fighting depression as I am not working and retirement fund is disapearing rapidly.  Is depression a part of SjS or is this just the fear and circumstances related to my health and finances? I want to cry daily.  Not like me at all.
And the days that I can actually do some housework are triumphs.  Not the spotless house I once had. 
Also, no good health ins would accept me.  I am on High Risk State policy which refuses to pay for any of my meds.  and cost 1 and 1/2 x more than my car payments.
Sorry to dump on you guys.  Just very tired and frustrated.
Soozel

[Poochie]

Hi Sooze,
Welcome!

Yes, I have the esphogeal spasms so bad they have landed me in hospital.  My gastro gave  me a prescription Nitro Glyserine (sp) tablets to use when they strike.  He also increased my Nexium to 2 a day for about 6 months.

I feel for you, I know how painful these things can be.  And YES, they are related to the Sjs.  Also swallowing difficulty.  I've had my esphogus stretched once about a year ago during an endoscopy and I'm waiting now for a swallowing test next week to see if I need it done again.

I hope your doctor can help you with this, it is so very painful.  I first thought I was having a heart attack. 

Do you have hiccups a lot?  They wake me up at night. 

Pooh

[Soozel]

Thanks so much Pooh (my favorite bear by the way)
I am on Protonix 2xd
Librax 4xd as sever cramping and diahrea accompy all this
cardizem q.d.  which drops my bp and exacerbates the fatigue
and the Plaquenil which exacerbates all of the the GI problems
They dialated my esophagus twice and one week later it was constricted again.  So they botoxed it.  One week later it began to constrict above the botox.  But the debilitating pain is eased to discomfort and not the radiating excruciating pain as before.
Thank you so for confirming that I am not just stressing my self into all this as implied by my Rheumy.  My GI doc is sooooo supportive.  Has even cut his fee for my lousy insurance.
Yes, hiccups.  When I can burp... YEA!!!!  it really releives my discomfort
Again... thank you, I dont feel quite as crazy.
Soozel

[sunshinein]

Oh my, I am a newbie too and you have hit on something else that I haven't thought of as being connected.  Can you describe these neck pains in more detail?  I have experienced pain, I think it has always been on the right side but I'm not real sure about that, just know that they are extremely painful.  Only last a few seconds and it feels like it is right next to the Adam's Apple.  Almost like a Charlie Horse feeling...

[Soozel]

Hi there,
No the pain I have is in between the breasts and radiates to back and shoulders.
but I have a "rock" like feeling in my throat most all the time.
I that what you feel?
Soozel

[sunshinein]

No mine is definitely a muscle spasm in the side of the front of my neck.  Haven't had them in the chest yet...

[Soozel]

Hi Sunshinein,
You might want to do search on "neck pain".  Maybe others have had it and relate their experience.  I have only been on here 2 days.
This group has given me more hope and help than 10 docs in 9 years.
Keep comin' back.  So many good people willing to share their experiences.
Soozel

[stillsguy]

re: "muscle spasm"

this is what I get... it feels like it occurs just under my chin, maybe ever so slightly to the right... sometimes if i tense my neck muscles it can bring it on, other times it comes on from (u guessed it) outa nowhere... it's like a very very tight clenching, which seems to knot so brutally tight... the pain is truly exquisite, a real ugly mofo, but slowly the knot unravels and i think "i hope I never have to go thru that  again!

it would b kinda interesting to c where others would actually point to their problem area in a foto of themselves... the more I consider this symp, the more I like the submandibular salivary gland (the sjs issue is after all a gland one,, non?) as being the perp (if were describing same issue....

Here's my what if, What if in sjs the salivary glands are sputtering, and not working so well (as u'd naturally think they would b) and r failing to produce enough amylase? this enzyme is needed to help initiate the breaking down of the various starches that feed our bodies the yummy sugar it needs (I mean glucose ain't spread across the universe for nuthin, right?)

So I wonder if the sjs fatigue thingy can b somehow associated with an enzyme deficiency originating from the salivary glands? I wonder if that bluddy pancreas has to work overtime because of those lazy susan sal glands?

[Patze]

Hi Soozel,

Let me also bring up the rear as usual!  I see the others have given you a lot of good information, and have already meet several of members (aren't they great?).  

You mention that you have a "rock" like feeling in my throat most all the time", I may have missed it, but have you had your thyroid checked lately?  I ask because I had a goiter and it was pressing on my throat and felt like there was a hard object there.  The doctor gaffed me off (my blood tests were all "normal" as usual  ), but a scan proved it as did the endo.  I was put on Synthroid the first day I saw the endo, and then later switched to Levoxyl).

The muscle spasms are awful, aren't they (prior to being put on a muscle relaxer)?  I used to get them bad all the time, now I get them occasionally and they are not nearly as bad (except around the eyes, got a whole 'nother thing going on there (not painful, just frustrating)).

Come often and I hope to chat with you soon!

Take care -

Patze

[sunshinein]

re: "muscle spasm"

this is what I get... it feels like it occurs just under my chin, maybe ever so slightly to the right... sometimes if i tense my neck muscles it can bring it on, other times it comes on from (u guessed it) outa nowhere... it's like a very very tight clenching, which seems to knot so brutally tight... the pain is truly exquisite, a real ugly mofo, but slowly the knot unravels and i think "i hope I never have to go thru that  again!

Thank you so much stillsguy.  It is so good to know that I am not alone.  Everytime it comes on I think, I can't tell anyone about this, they will think I am crazy.  Now I am not crazy alone...