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Gastric Emptying Test Results


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#1 nan

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Posted 17 January 2007 - 11:37 AM

Hi,
I found out today that I do have delayed emptying of my stomach. I have to do an endoscopy next. When I heard the message I started crying. I think I might still be in denial about my diagnosis. I had just been to pick up the orders to have chest x-ray, elbow, wrist, and hand x-rays, PFT, and echocardiogram. Seeing my name with diagnosis of scleroderma and to check for pulmonary fibrosis and pulmonary hypertension was so weird. Thanks for listening! The good news is that I just saved a bunch of money on my car insurance! :D Pretty weak joke, but I thought I would try. I have many blessings and I will focus on those.
Take Care everybody!
Nan

P.S. I do x-rays tomorrow or Friday and PFT and echocardiogram on Tuesday. My husband had surgery on his right elbow last Friday. For once I can take care of him. Bless him! My son is having oral surgery on Jan.26th. Thank heavens we have health insurance!!!!

#2 Margaret

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Posted 17 January 2007 - 12:16 PM

Nan.....my heart goes out to you. I remember when my son got the 'official' diagnosis of Autism, I broke down and cried.....even though I 'knew' it long before that 'official evaluation.' You say your stomach has delayed emptying....did it start with your esophagus? Gareth's esophagus doesn't empty into the stomach. Is that the next 'step' when the stomach doesn't empty or is that just your symptom of scleroderma? What were the symptoms or could you feel food left in your stomach? Just curious as I am learning all this sclero stuff myself to better understand how Gareth feels.
Take care, Everyone.
Margaret

#3 Sweet

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Posted 17 January 2007 - 01:33 PM

Nan

I'm so sorry. I know this whole business can be so upsetting. We are here for you! Vent, cry, ask questions, tell us funny insurance jokes, we love ya!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Heidi

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Posted 17 January 2007 - 02:35 PM

Hi Nan,

I am so sorry to hear that you now have the "official" diagnosis.....but at least now that the doctors know, they will know what to keep a look out for and can make sure you are getting appropriate treatment. I know there are several meds out there that have helped others with the delayed gastric emptying, so hopefully the doctors will get you started on something that will help you soon.

I know it must be tiring going through all of these test, but I am glad to see that your doctors are being so thorough. It is much better in the long run because this way if something is going on, hopefully it will be caught early on.

Please do keep us posted.

Warm wishes,
Heidi

#5 americanmike

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Posted 17 January 2007 - 03:21 PM

Hi Nan--

First of all. I laughed out loud! And then read it to my wife because it was very funny.

More importantly though, I'm sorry you're having such a hard time with the reality hitting home. I dread the day when that might happen to me. I've carved out a little psychological space in UCTD and keep hoping against progressing symptoms.

As the others said... now that you know you can take it on full throttle.

Check out stem cell transplant info on the web here at sclero.org. It's truly amazing some of the results. Many doctors don't know or don't really push this approach becaue it's still experimental, but you can be the judge of the statistics.

I hope you get some good results soon.

Michael In Florida

#6 nan

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Posted 17 January 2007 - 03:35 PM

Margaret,
I hope you don't mind me asking this. Does your son have Autism and Scleroderma? If so, that's not fair!!!!! I am not sure about your questions. I have GERD and have had 2 esophageal yeast infections. I also have watermelon stomach that goes along with scleroderma. It's lesions that bleed spontaneously. I feel nauseated and have heartburn all the time. My stomach feels very full most of the time. It cramps up a lot also. I will let you know what I find out.
Take Care!
Nan

#7 nan

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Posted 17 January 2007 - 03:35 PM

Sweet and Heidi,
Thanks so much for your responses!!! I don't know what I would do without this message board. What a blessing!
Nan

#8 Margaret

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Posted 17 January 2007 - 04:15 PM

<<I hope you don't mind me asking this. Does your son have Autism and Scleroderma? If so, that's not fair!!!!! >>

Hi Nan ,
Yes....he was born with Down Syndrome, diagnosis'd with Autism at age 5, and is now being worked up for sine Scleroderma. But.....he is a very high functioning kid.....just doesn't have much speech to relate his aches, pains, worries, etc. If I could take away the sS from him and put it on myself, I would do it tomorrow. You are right....life isn't fair, but our faith keeps us going. My question was....did you start with esophageal dismotility and then went to the watermelon stomach and the stomach not emptying? Or....do you just have watermelon stomach/stomach dismotility and your esophagus works fine? We know Gareth's got the esoph.dismotility....just curious as to whether the stomach issues are the next possible sequence of events for us?
Take care, Everyone.
Margaret

#9 nan

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Posted 18 January 2007 - 06:27 AM

Yes, my esophagus messed up first. I don't think that means your son will get the other stuff I have. With scleroderma it seems to be so different for each person. Watermelon stomach is very rare. Yes, faith does keep me going also. Hug your precious son!
Nan

#10 nan

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Posted 18 January 2007 - 06:29 AM

Michael,
Thanks for your encouraging words! I will check out the stem cell info. I think the scariest thing about this disease is that you never know what is lurking in the shadows. I am trying to take a day at a time.
Take Care!
Nan