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HalleyJ 04-10-2001 09:55 PM

Just wanted to report to you ReeAnn. My spine MRI was negative. Spine specialist recommends physical therapy. Not sure if I should try that or go back to my regular dr. to see if it could be something else. Just thought I would let you know. How are you feeling?

ReeAnn 04-11-2001 02:45 PM

Hi Halley,

Glad your test came out fine.. though if you are like me, would wish at least one test came back abnormal so you could get a diagnosis. Not sure what other testing to suggest you pursue.

I am feeling a little better today. Back on my low fat diet which helps. Just very tired. having trouble staying awake. Think I could sleep for about 24 hrs straight. Thanks for asking!!!

HalleyJ 04-11-2001 09:52 PM

Hi ReeAnn, I was just read your previous posts over again. You certainly have been through the mill. Are you still working. I'm glad this was a pretty good day for you. I'm tired all the time too. I figured it is from dealing with pain, worry and all the medicine. Hope you continue to feel better.

HalleyJ 04-24-2001 01:44 PM

Hi ReeAnn, I just notice you haven't written anything here for awhile. Are you OK?

ReeAnn 04-24-2001 06:32 PM

Hello Halley,

Kind of been having a rough time lately. Had some problems with what my PCP calls "Flushing Syndrome". Turning beet red from head to toe with burning and itching. After about 45 minutes the redness and burning go away, but itches stays for days. When it continued happening, my PCP ordered some tests. One is a 24 hour urine collection and the other is a cat scan (can't forget the never ending blood work). Both my GI and PCP assumed I had already had one... The scan is scheduled for May 1st. I did the urine test this last weekend. It was a weekend straight from h...

I had to come off all my meds to do this test. I was very sick all weekend with the dry heaves, nausea, stomach pains, headache, and my tongue swelled up... I was so sick I went to the ER for the first with pancreatitis (?) problems. They did give me a shot of something to calm the nausea and they said it would help with my tongue. And after checking with the lab, they okayed my pain pills.

This urine test is called 5-HIAA. It is looking for canerous tumor markers usually found anywhere in the digestive system or in the lungs. Flushing is one of the symptoms... along with a mirage of digestive problems. Needless to say, I am very scared.... So very afraid they are going to find the tumors in the pancreas... With my history of growing extra parts (precancerous fibroids, polyps several places, cysts, etc) I dont have any doubt they will find something. I am afriad because of my malabsorption problems give me about a 75% (or better) chance it will be the pancreas... A death sentence with most not lasting 6 months after diagnosis. I am scared.....

If this isn't enough to be dealing with, my boyfriend moved out while I was in the ER..

please remember me in your prayers...


[quote]Originally posted by HalleyJ:
[b]Hi ReeAnn, I just notice you haven't written anything here for awhile. Are you OK?[/b][/quote]

HalleyJ 04-24-2001 07:48 PM

ReeAnn, I am so sorry to hear you have been having such a rough time. Do you have anyone else nearby to help you? I've been browsing another healthboard sponsored by John Hopkins. All is for people with or family of people with pancreas cancer. I can get you the web address if you are interested. People there are very nice. I have an appointment with my doctor on Friday.
I'll be thinking of & praying for you. Halley

HalleyJ 04-25-2001 08:12 PM

Hi ReeAnn and anyone else who is interested.
This is a site similiar to this one, but only for pancreas cancer. Very nice supportive folks. [url="http://www.path.jhu.***/pancreas"]http://www.path.jhu.***/pancreas[/url]

ReeAnn 04-28-2001 09:26 AM

Hello Halley,

Got my urine test results back. No cancer markers!! YES!!!! I was so worried about that...... Very next day I was back at the doc because I was bleeding from the ear. she could not see where the blood was coming from in the inner ear. Have to go to a specialist about and the first available appointment is May 3rd. My cat scan is scheduled for May 1st and on May 5th (? - maybe it is the 7th - don't remember for sure) I am scheduled for a echocardigram.

Thanks fr the site! I have put it in favorite places and will be checking it out later....

Got to run for now...


HalleyJ 04-28-2001 07:43 PM

ReeAnn, I'm so happy your test was good. Can't imagine what the bleeding from the ear would be from. I'm so glad you don't need to be concerned about the pc site I mentioned. I saw my doctor yesterday. His nurse is to schdule me for a scope down the throat test. Sorry don't remember the name of it. I should know when by Tuesday. With all this pain, I know they will find something. I just don't know what. You are still in my prayers. Halley

fjames 05-01-2001 07:18 PM

I'm back. I've been in and out of the hospital every 4 weeks since jan. 1 2001. this is not normal for me. My attacks used to be every 10-12 weeks. This exhausts me.
My doctor seems to be brushing me off. she wants me to find a pain clinic to manage my pain management medication, but none of the clinics in our city are taking people. How do I find a doctor who is especially knowledgeable in pain medicines?
this week i'm going to John's Hopkin, MD hoping they will see something different or at least come up with a better pain mgmt idea. I currently take 8 (20mg) oxycontin a day. that keeps pain manageable IF they stay down. The vomiting is such a hassel. (visteral doesn't always help)
I was hoping that taking out my galbladder (found "sludge")would help decrease pain, vomiting or attack frequency. But now I've read some pretty awful stories regarding gallbladder. I don't know what to think.
It's frustrating to not have the answers. That we all share. Hope you all are finding some painfree moments.
One more thing I forgot to share, I don't work now. I've been home on dissability since Dec. Too hard to work with all of this going on.

HalleyJ 05-01-2001 07:23 PM

Hi ReeAnn, Just wondering how your CAT scan went today and how you are feeling? Better I hope.

HalleyJ 05-04-2001 10:37 PM

Hi ReeAnn, Just wanted you to know I'm still thinking about you. Please let me know how you are doing. I know from your last post, you have had a busy week. Halley

ReeAnn 05-13-2001 10:16 AM

Hello Halley,

Thanks for thinking of me!! Has been kind of rough these past few weeks. Always something new going on... Always more stress. On Wednesday an HR representative escorted me down to employee health and I was told not to come back until I had a doc's release. I am thanking my lucky stars that they did not out and out fire me!!

That same day I hand carried a letter to my doctor from employee health to my Doctor and made an appointment for Thursday. She put on allegro for this chronic cough which might be allergies. I am also on Nanonex inhaler from the EENT doc. One think my doc did do was put me on Prozac. Never in my wildest dreams did I imagine taking prozac. That brings the total rx's up to 13 that I am on right now.

Still haven't gotten the paper work back from the doc. Have emphasized how important this is... Said she was going to try and get them done on Thursday. Call and left a message on Friday. Still no papers. Will be on the phone all day if I have to on Monday to get them. Tuesday I go in for an electrocadiogram - unltrasound of the heart. The next test....

Then end of this month I go see GI again. And to the EENT to find out how much hearing I lost in my left ear. On June 6th I go to the gyne for another test. That week in between I am going to try an get away for a few days. Need to get away for a while and not worry about anything. Not sure where I am going yet... Probably wont know until I leave.. Just somewhere away.

Hope you are doing okay. What's new with you? How is your pancreatitis these days? Think of you too.. often...


HalleyJ 05-13-2001 02:07 PM

Hi ReeAnn, I'm glad you finally answered. I do undestand that you have been very busy. I have been concerned and have check this board everyday to hear how you are doing. I'm glad you are going to get away for awhile. As for me, I went to my doctor again on Thursday. I was in tears becaue the pain was so bad. He wants me to contact my spine specialist again before I start therapy, so I called and left message. I went to spine specialist, because I thought pinched nerve or something. I really don't think it is a muscle problem. My doctor refuses to look into anything else until I try back therapy. He put me on valium and vicodin which scares me to death because it can be addictive. Most days I try and get by on two each per day instead of the three he prescribed. I must admit, it has helped the pain some. I was having heartburn that prevacid was not helpiing so I'm scheduled for a EDG or EGD (scope down the throat test) this coming Tuesday. Oh, to be normal again. Please keep me posted on your condition as I do think of you often. You didn't mention if you have any family or friends to help you through this that live nearby. Keep in touch. Halley

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