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Result of Sialogram (a test of parotid gland)


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#1 Chopper

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Posted 31 May 2011 - 12:10 PM

Hello All,

Been a little while since I posted so I thought I would share the latest test I was given since it doesn't seem like a common test. I was given a sialogram because I was told that the positive antibodies I have for limited scleroderma can sometimes be seen in patients with Sjogren's (even though I don't have positive antibodies for Sjogren's). I 'think' to help fine tune things, this was a test they wanted me to have. When I went to have it, I asked the nurse if they perform many, she said maybe 10 a year is all. I told her I didn't fully understand why I was asked to have it done. She asked if I had Raynaud's because some people with that get this test - which I thought was interesting.

How it works: While lying on a table under an xray machine, they put a blunt small metal pin in your salivary gland for a minute to start dilating the opening, followed by a larger one, then I think one more. They then insert a small tube into your gland. None of this hurts. They get the xray machine in place around your head and simultaneously xray while injecting contrast into your gland, uncomfortable, but not painful. You move your head in every direction to get pictures from all angles. Then they send you to get a CT scan. Afterwards they xray you to make sure the contrast is all out. Only one side can be done at a time.

I went back the following week for the other side, but decided not to have it done because the doctor performing it told me he felt there was nothing acute and saw only mild disease. It seemed like an expensive test so I thought I would try to spare my insurance company the additional expense for now, unless my rheumatologist decides after seeing me in a couple weeks that she wants me to have the other side done. So that's good news.

However, I would like to whine here about my stomach. It was last August that the GI doctor saw evidence in my endoscopy of gastroparesis. Since then my gastroparesis continues to worsen. Last week I had a miserable sinus infection and thought maybe that's why I was having more trouble eating. Interestingly though, that's not the case. I take Eryped200 3 times a day 1/2 hour before each main meal to help my stomach contract. The pharmacy that I had been getting the med from gave me a full month's supply and told me it's good for that long. Last week I was finishing the 4th week when I was having increased trouble eating. In order to save money, I just ordered this med from the mail (buy 2 months get 1 free). When the mail order pharmacist called me to tell me how to mix it when it comes, and he said to only do one bottle at a time and discard it after 14 days. He said it loses it potency after 14 days. I called my GI doctor's office and they researched that and confirmed that. No wonder I've had a hard time eating lately! So I ran out of medicine a couple days ago and I'm hoping the mail order will arrive today or tomorrow, but I am miserable, and even kinda scared. I feel as though I can't eat without being sick. I had 2 gluten free pumpkin muffins during the morning and I was so nauseous and my stomach hurt - I fought throwing up. I'm sipping on broth right now and wondering how bad is this going to get in the future? In less than a year I've seen this worsen and it gets me worried, especially when it's causing me alot of discomfort. I don't know anyone else with gastroparesis and I want to whine to someone else who knows what I'm going through!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Shelley Ensz

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Posted 31 May 2011 - 08:14 PM

Hi Chopper,

Thanks for your description of the sialogram, I am sure others will find it helpful, too. I have had several of them but both times they were extremely painful for me (real tear jerkers) as I had active inflammation and/or infection, along with duct problems, and a very swollen parotid gland both times. So fair warning to those who have active issues like pain and swelling with the gland that it might not be a walk in the park and if you are offered pain meds for it ahead of time, take them up on it.

I'm sorry you're having such problems with gastroparesis. That's good to know about mixing the meds! I hope that things settle down for you soon, and give you some respite.

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Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 01 June 2011 - 05:52 AM

Hi Chopper,

I found your description of your sialogram very interesting, as I've never heard of the procedure before. I'm pleased that you only needed to have one side done for the present; I do hope that the other one will remain the same and you won't have to have it done.

I'm very sorry to hear about your gastroparesis and the problems you're having eating and with the antibiotic you're taking. Hopefully, things will settle down and you will soon feel more comfortable.

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#4 Amanda Thorpe

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Posted 01 June 2011 - 07:57 AM

Hello Chopper

I love that when sclerodermians have procedures they think to share them with the rest of us! :thank-you: When I had my biventricular ICD put in I would have filmed it if I could have for all of you to see! When I had my ulcers my first thought was to get a picture of them onto this site :lol:! Oh what a strange world we live in these days!

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#5 enjoytheride

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Posted 01 June 2011 - 11:32 PM

That is rough about the digestive problems. So far my problems are much less severe. But I have found that if I limit the different types of food I have at any one time, I do better. So I tend to eat some fruit (for example) then wait a couple for hours for an egg, then some vegetables, etc.
Commercially prepared foods are frequently harder for me to digest. I don't know why but I definitely do better on stuff I make from scratch and whole foods. But everyone is so individual.
I hope your medication comes soon.

#6 Chopper

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Posted 02 June 2011 - 08:10 AM

The biggest things that have helped me with gastroparesis, is eating smaller portions, low fat, and low fiber, and for me also gluten and dairy free. Thank goodness for the internet in this department because I didn't know what low fiber truly meant, and believe it or not, my GI doctor had no info for me! hmph! I found a couple websites that gave lists of what you can eat and what you shouldn't. I found a dietitian online that specializes in gastroparesis and what a help she was too. It's a challenge, but with forethought and preparation, I have been able to do well with it and still eat fairly healthy. I have also found that some days are bad and some days aren't so bad, with no way to predict it. I had two really bad days in a row, then yesterday I had some relief. Yay!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#7 Joelf

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Posted 02 June 2011 - 11:13 AM

Hi Chopper,

Enjoy's post is very interesting as I have a friend with gut involvement and she has found that by being very careful with her diet as you've suggested and not having too much fibre, fat or (sadly) chocolate she is able to keep her more unpleasant symptoms under control (she was experiencing constipation followed by diarrhea constantly, which was making her life a misery.)

I'm glad you had some relief yesterday....long may it continue!! :yes:

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