Finally Some Answers . . .

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somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 9/10/2012 8:21 AM (GMT -6)   
Hi again,

Can't stay long but I'm dropping in to say hello and to tell those of you who remember me that we finally have some answers.

I have been formally diagnosed through biopsy with Sjogren's Syndrome as of about July of this year. I was diagnosed by an excellent rheumatologist at Baylor Medical Center in Dallas and I'm confident of the diagnosis.

This diagnosis explains so many things including problems following surgeries even when the surgeries were necessary such as the NF I had over a year ago.

Sjogren's symptoms have been a problem for over 10 years that I'm aware of but we didn't know what they were, couldn't connect them together and certainly none of the doctors we were seeing at the time were suspicious at all or even aware of Sjogren's and its effects.

I also have Postherpetic Neuropathy as a result of the Shingles I had about 4 years ago and this was also something new to me as I'd never heard of it before either. After having Shingles was when the pain became constant and without treatment it would be incapacitating.

My rheumatologist at Baylor is Harvard trained and very good but he is a 5 to 6 hour drive from us and visiting his office requires an overnight stay which we're now becoming used to as I've seen him 5 times. I've seen him enough (about 60 to 90 minutes per appointment) that he has also diagnosed Fibromalgia which is also something I'd only heard about but never thought too much about or had given much credence to. Now I do.

I'm on medication for the pain and it is somewhat better but I'm still at the low end of the daily dosage of the drug so it may be too soon to say how it's going to work in the long run and if the doctor will increase it again, change the med or just add something to it.

I just wanted you to know that there are answers if you look hard enough even though they are not always the answers you want to hear. Sjogren's is an incurable auto-immune disease that I wouldn't wish on my worst enemy but I am none the less grateful to finally know what is wrong with me. Searching for over a decade for answers is not fun for anyone but I do encourage everyone to be their number one advocate because you do not always get answers if you only sit and wait.

I wish everyone good health and happiness and I guess now when I visit the forum I'll be visiting several other groups including Sjogren's Syndrome since my GERD is not a problem anymore at all.

Thanks for offers to help in the past and God's speed to you all.
Rita

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 9/10/2012 1:51 PM (GMT -6)   
Good to hear that you finally have an overall picture of what is going on with you. Not knowing is part of the stress and frustration. Thank you for sharing your journey!
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 9/10/2012 5:12 PM (GMT -6)   
Rita-

It's good to hear from you. It has being a while. While I am happy you are getting answers, I am also sorry to hear the DX. I do hope they get your meds squared away for you soon.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 9/10/2012 8:08 PM (GMT -6)   
Hi Rita,
It's great to hear from you!  You had a rough go of it after surgery, and it's good to hear that you've got things in better control now.  I agree that it's always better to understand your symptoms and the reasons you have them.  They're not fun, but at least you know why you're experiencing them.
I wish you the best of health!  Stop by again whenever you can.
Take care,
Denise
 
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/11/2012 7:40 AM (GMT -6)   
Hey Rita,

I can't do much more than echo what Bill and Denise already said. So let me just say best of luck to you and I am happy that you have finally gotten answers. You are one tough cookie!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/11/2012 10:39 AM (GMT -6)   
Hi Rita

I'm glad to hear you've made such progress diagnosis wise - you waited so long to get things sorted I know. I hope you can move forward now with some good management strategies from the specialist - sounds like you're in good hands at last!

You looked into St John's wort - it's supposed to be good for post herpetic pain? (Have to be careful if taking alongside drugs though as it can reduce the efficacy of some medical drugs).

Thanks for stopping by, it's good to hear from you.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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