Author Topic: Long Time!  (Read 1973 times)

ynevar

  • Guest
Long Time!
« on: January 19, 2011, 09:00:45 PM »
Hello Everyone!  Been a while since I have posted.  I have gone through a ton of stuff.  I have been going through a bunch of the same.  I continue to live with a lot of pain on a daily basis, some days better than others.  I have had more testing.  Saw another neurologist, who tested me for ACE to see if I might have Sarcoidosis, which tested within normal limits.  Although a lot of the symptoms seemed so similar in the stories I read online, especially in regards to the severe pain I have been dealing with.  

I went to the dentist and they did some salivary testing and I only produced 3.5 mls of saliva in 5 minutes and they told me that most people produce a minimum of 7.5 mls.  She suggested I used the Biotene products and I went and bought them yesterday.  It has been pretty cold and snowy and I just ache.  

I have had problems with my GI tract, still.  I have lost 30 lbs since Christmas.  I even ate every cookie I wanted to... Lost 2 pants sizes.  I had an upper GI today since last week I felt nauseous and suddenly vomited a bunch of blood.  I am just tired of feeling sick.  I have yet to hear about my SSDI.  I don't know when I will hear about that, but it will be good to hear, and I hope it is good news.  

I am exhausted and the emotional toll is high.  I think that most of the physical evidence points to Sjogren's.  I guess time will tell.  I know that most time it takes a while before anyone has a definitive diagnosis, but I am getting frustrated, as most surely do.  I am... frustrated... I have been feeling ill for over a year now.  

Sha

  • Guest
Re: Long Time!
« Reply #1 on: January 19, 2011, 10:32:18 PM »
Welcome back!! ;D

Sorry to hear you are in so much pain!

vomitting up blood?? That is NOT good! When will ya find out the results of the upper GI?

Good luck on the SSDI!

I hope ya feel better soon!!

Sha

ynevar

  • Guest
Re: Long Time!
« Reply #2 on: January 19, 2011, 11:41:10 PM »
Thank you for the welcome back... I have been somewhat stuck in this limbo land dealing with the continued symptoms, loss of work, emotional stressors and frustrations and of course dealing with the medical "professionals." 

I am currently diagnosed Undifferentiated Connective Tissue Disease, but think with the salivary testing I very well may end up with a Sjogren's diagnosis.

At any rate, they all agree that I have something rheumatological going on. 

Have missed some of the great folks on here.  Wishing you all well.

-Y

Babs659

  • Guest
Re: Long Time!
« Reply #3 on: January 20, 2011, 04:39:38 AM »
Did they tell you why you vomitted blood?? :-\

tired of it

  • Guest
Re: Long Time!
« Reply #4 on: January 20, 2011, 05:06:17 AM »
Your vomiting blood, you lost 30 pounds in less then a month, and your not in the hospital, are you sure your not from Pittsburgh, if you were I could believe it, as I have said before,, Dogs get better care then some of us,

ynevar

  • Guest
Re: Long Time!
« Reply #5 on: January 20, 2011, 10:15:29 AM »
I think they just want me to croak... LOL  I don't know why it is not taken more seriously.  I guess I can't worry too much, it's all I do and it doesn't help me much. 

I am totally beat today.  Calling my rheumatologist and letting them know the results of my salivary testing will be forthcoming. 

So much pain...UGH!  I did stop puking blood.  The upper GI did not show anything obvious, the radiologist told me right then since he was there while it was being done.  I am at the I don't give ____ point right now...

-Y

ynevar

  • Guest
Re: Long Time!
« Reply #6 on: January 20, 2011, 11:36:13 AM »
It's not like I can't stand to lose a few pounds, in fact everyone is congratulating me... I ate every darn Christmas cookie I wanted, Prime Rib and whatever I wanted...

No one seems the least bit concerned that I have lost 30 lbs eating like a pig...

I keep trying to tell myself that it is the plaquenil working and my body is finally absorbing the nutrients and I am losing because of it?  Anyhow I try to tell myself I shouldn't worry about this... but deep down I am...

*sigh*

-Y

Sha

  • Guest
Re: Long Time!
« Reply #7 on: January 20, 2011, 08:36:33 PM »
You need to get the puking blood, losing 30 pounds like ya sneezed out please!!! Get a second opinion....doesn't that send  a red flag!!! :o

Sha who would be totally worried if it was me :'( sending ya hugs and  :-*

Suzie

  • Guest
Re: Long Time!
« Reply #8 on: January 20, 2011, 10:13:01 PM »
Welcome back, Sounds like you've been through the mill recently. This is the place to be!

Hope you get some answers soon and some help,

Suzie

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13398
Re: Long Time!
« Reply #9 on: January 21, 2011, 08:49:59 PM »
ynever, WElcome back to the fold. I guess the first thing I would do it get a second GI opinion like was already mentioned.

Also, the fact that you have been diagnosedw with the mixed conective tissue disease is a big plus. They are saying that you have something autoimmue going on but they have been unable to nail down the exact disease yet. I think this diagnosis usually is given when lupu and scleroderma are being considered. There are 2 more, but darned if I can think of them.

I don't blame you for being fed up, but please take a the weekend off to just vegetate and then start in next week shaking the trees again to get some answers. We have to just keep at it. I know that I was sick for many years and spent about 15 years with lots of weird symptoms and infections. I had to go to the doctor all the time to just keep shaking the bushes. It took a lot of my check every week to keep up with the doctor and dentist bills.

It is such a pain to be in this position and it makes us just sit down and bawl and the next minute we are so mad we could fight!!!! The bottom line is---just don't quit looking for the answer. A few days off now and again are bvery much needed to help us regroup. Going to ER doesn't help either. I had been to ER and urgent care and been told I wasn't sick enough to be there. Made me wonder just what the heck being sick consisted of. Irish ;D