Update...Sjoren's/Salivary Gland Biopsy

[Want to feel well!!!]

On July 2nd I had a small salivary gland biopsy to confirm or r/o Sjogren's.  The doctor who did the small salivary gland biopsy (at the CC) called this morning and said that the biopsy shows inflammation and it is his opinion, in combination with other test results, I meet the criteria for Sjogren's.  He does not feel a large salivary gland biopsy is necessary now.  He will pass this on to the immunologist.

I will not see see the immunologist until Sept 5th but by then I will have been taking Prednisone and Plaquenil for nine weeks and I think I will have a good idea how well it is working.  I am curious if he will settle with Sjogren's or go with mixed connective tissue...either way the treatment is the same.  YAHOO!!!!  Love that word...treatment!

I am feeling better every day...loving life again...feeling like I am young...I cannot believe the difference in my daily life.  To go from having days that I could not muster the strength to shower to being as active as I was in my 30's is nothing short of a miracle!

Now I am facing a breast biopsy this coming Tuesday (this one kinda came outta the blue).  I am not really too worried about it...I've come to far to have anything stop me now!    

For all the Limbo landers out there, DO NOT GIVE UP!!!  This long journey was so worth it for me.  Wellness is a marvelous thing!!!

Wanna :o)

[vizslagal]

I am so happy that you are feeling better.

I was wondering if you had the typical antibody blood tests done and what your results were.  I just got mine and they were all negative.  So my Rheumatologist says no to autoimmune for me.  I will see her again though in three months.

I have chronic dry eye that is responding 100% better with the Restais treatment.  My opthamologist was quite pleased how much improved I was in only two months.  He said in six it would be even better.  I recommend Restasis because it worked for me.


I am so happy that you are feeling so well.  It is nice when you can get your life back and start living and not obsessing about our bodies.

Yvette

[Want to feel well!!!]

Hey Sally...given our commonalities I know YOU understand the thrill of being back in the saddle!  Sprinting into and loving a challenging head wind and DOING it!!!

I have been following your progress and I am with you in thoughts and prayers, Sweetie!  Hope you (and jr) are doing well today.

Thank you for the sweet post...

(((HUGE HUGS to you and JR))))
Wanna :o)

  

[Super_sally888]

Hi,

I am so super happy for you.  This rollercoaster has a happy ending.  You have a diagnosis and the condition is manageable AND you're getting your life back.

Of course, you'll hang around to continue to be an inspiration.

Wonderful wonderful news.

Sally

[Want to feel well!!!]

Life is great and I am lovin' it.

Fluf...your post made ME cry!!!  Tears of joy!!!!!  YOU keep going.  WE are her for you!!!!

Tahiri...You will be here soon!!!  You need to keep going and keep trying!  

Not to show off, but I did a quick 37 miles this morning.  I only want to show that life can return out of limbo land...in full force...better than ever!!!

I had to take my son to the doctor today (sinus infection stuff) and his doctor looked at me and said, “You are looking good!  What have you been doing?”  I told him about going to the CC and that I have been cycling regularly again.  He said, “Yes, I remember you biked.”  How cool.  He had treated me at my worst a few years ago and was unallbe to recognize me at that time...it's kind of ironic now.

Love to all...((((HUGS))))
Wanna :o)



  

[Tahiri_Veila]

I am so happy that your search is over.  I am glad that you are feeling better and getting back to normal.  I hope things continue to improve.  Although us limbolanders will miss your company in limboland.  JK.  Enjoy your newfound energy.

Tahiri

[Fluffysmom]

I just read this thread and have tears of happiness flowing for you!  

Answers, being able to go out for a "quick 26 mile bike ride", feeling well!  I'm so happy I could just pop!

I'm in Limbo, staring at a packet of paperwork for my first visit to an MS specialist, and see the road stretching behind and in front of me, and it doesn't seem so overwhelming anymore.  Your success if very encouraging!

I'm so glad you having less fatigue and FEELING WELL!!!!!!

More Hugs!

Kathy

[Want to feel well!!!]

Elaine...thank you!  It is truly a wonderful gift.

Quix...yes...last year that one poster referred to me as a "head case."  LOL!!!  I have been looking for a definitive answer for 18 months, however I know this all started about 10 years ago.  In hind site things have fallen into place in my mind, but it is too bad it all didn't make sense as it was happening.

I went out for a quick 26 mile bike ride yesterday and I am still getting stronger and faster...I can honestly say I have not been this strong in years.  I can summon up the strength to get up a hill or to continue to sprint into the wind.  I am amazed at the ability to keep going.  I have not been this fast since I was in my 20's!!!!  Fatigue is no longer a constant ongoing battle!

I will do some reading about Sjogren's, but for now I am out and enjoying life!!!!

And I want to encourage limbo landers to keep going and looking for answers!!

((((HUGS))))
Wanna :o)
  

[Want to feel well!!!]

I do have dry eyes and the ophthalmologist wanted to give me an Rx for Restasis, but I wanted to see if the dry eyes would improve once I started Plaquenil and Prednisone.  For now I am using an eye lubricant.

I also have dry mouth and I keep chap stick in a holster.  I NEVER leave the house without gum, water, and chap stick.

I sent you a PM as well...

Thanks for the happiness...

(((HUGS)))
Wanna :o)
  

[santana8]

I am so happy for you that you have an answer and are on treatment and feeling good!!!!!!!!!!  I am in the middle of getting Sjogren's ruled out myself and the lip biopsy is the next step for me because the test for the Sjogren's antibodies were both negative and so was the ANA test!!

I was wondering if you had lesions show up on brain MRI?  Also did you have the antibody tests and what was your results?  I have had severe dry eye for two years since the sudden onset of neurological disfunction, and really it has been one of my most severe symptoms this whole time. This is why I am suspecting Sjogren's.  The Optho started me on Restasis a couple months back and it is really the only thing that has shown some improvement in the dry eye condition.

Restasis is suposed to be, according to my pharmist, a immune supressant eye drop of some kind.  Did you have severe dry eye as one of your main symptoms with this?

Sorry to ask so many questions, but I can't remember a lot of the details of your case, and I am very interested in what your symtoms were and are!!

~Santana~

[monotreme]

I am so happy for you.  Enjoy your gift of a new life!!  

Elaine

[Quixotic1]

I am soooo thrilled.  Wow, MCTD or more likely Sjogren's.  What a rollarcoaster you've been on.  The more I read about Sjogren's the more I see that it is one of the closest MS mimics, only more treatable.  You can't know how happy I am that you are feeling so great - physically and emotionally.

You have been with us since way last summer, wasn't it when someone suggested that you sounded like a "head case?"  What a long haul it has been with the EBV guy and all.  I am so glad you made it to an Immunologist!

Wow, this is sooooo FINE.  A real answer that fits the problem.  Now, you understand that you HAVE to learn all you can about SS and you HAVE to stay here to help up out, don't you?  Mafia Family Rules.  Friends Don't Let Friends Leave!  Even though you are going to be out cycling and being a real living person a whole lot more.  You are OURS now.

I am so pleased for you, Kiddo.

Momma Bear

[wingnut19]

.....And I don't even have one of those SPFT's........LOL


OK, that's enough....

[Want to feel well!!!]

I meant pin *****...

Okay, Prednisone and Plaquenil do not help with typos!

Wanna :o)

[Want to feel well!!!]

That makes it past the cyber gremlins but pink ***** won't??

Thanks for the laugh!

Wanna :o)

[wingnut19]

Jackass!!!   LOLOLOLOL

[Want to feel well!!!]

Thanks!!!!  I almost feel euphoric...it's almost scary (not really)...lovin' life is so cool!

(((HUGS))) back at you guys...
Wanna :o)

[wingnut19]

You already know how happy I am for you, but I just wanted to post here because I can!!


Love ya toots!!

BUG HUGS!!

Tamster  :)

[slightlybroken]

I'm so happy for you! I bet your glad to get of Limboland.

{{{HAPPY DAY}}}}
{{{HUGS}}}

[doni54]

You just sound like a new woman!!!  I couldn't be happier for you!!!!  

Take care of yourself and have a good time with all that newfound energy, don't waste a minute!!!

Love & Hugs
doni

[Want to feel well!!!]

Thanks guys!  It really feels good to feel well!!!

I truly want to give hope to those in limbo.  There are answers out there.

(((HUGS)))
Wanna :o)

[Wobbly]

WOW...it does happen...results...I'm so happy for you, to hear how you are feeling so much better and getting treatment.

This give us Limbolanders some hope that there might be a light at the end of that horrible tunnel we are going through...

good luck with your biopsy and keep us informed on how things are going..
OH...Of course you know you can't leave us...WE NEED YOU...

take care
andie

[floridamom2]

Words cannot express how happy I am for you!!  This has been a long road and you deserveto feel marvelous again!!

Love and Big Cyber Hugs,
Kristin

[Momzilla]

Yea!!!!!

There couldn't be better news for someone who's waited so long in misery for an answer, Wanna!  Good for you!

You hung in there and fought for what you needed with great determination.  Go, Sista!

I hope you continue to feel better and better, and that you stay here with us, to inspire those of us here without a diagnose yet to keep on truckin'!

Love and a Big High Five!

Zilla*  And much luck with you breast biopsy.  Keep us posted!