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I'm Really Getting Tired Of All This....


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I am having major problems with my stomach from WHAT I THOUGHT was due to gastroparesis that was diagnosed with nuclear gastric emptying study. I had endoscopic botox injections last week to try and combat nausea and such. So far this has not been successful at helping my nausea and helping me gain weight.

I called my neuro today and told him all about the latest and greatest and asked him what he thought of gastric pacing for this because the GI doc in maine that I see is now referring me to a gastric surgeon with gastric pacing in mind. The neuro in boston that I see, that I spoke with today started telling me that he doesnt even think I have gastroparesis and even if I did is "it clearly very mild" (I gave him the nuclear imaging reports). I was told by my docs in maine (PCP, CARDIO, GI) that this was a moderate case of gastroparesis and is causing my weight loss, nausea,etc. the neuro said basically that I needed to be assessed down in boston because they were all wrong in maine and that I would be making a huge mistake by having gastric pacing....

I told him I could not afford to lose any more weight, that i was feeling very weak, fatigued, nauseous, and that it needed to end. he said if it were severe gastroparesis, to the point that i was unable to eat and vomiting all the time, that he could see me TRULY having gastroparesis, but because i'm not vomiting and can eat, that I dont have it -- EVEN THOUGH the gastric emptying test says otherwise and all my docs up here say otherwise also.

he left the convo at me needing to talk to a GI doc I saw several months ago in the boston area who WAS NOT HELPFUL in the least bit and told me of therapeutic options that I had already exhausted that HAD NOT HELPED. he said that I shouldnt be going through him because he is a neuro and has nothing to do with GI stuff, heh, but on the same token, he is willing to READ supposedly ACCURATELY a GI test (GES?) ?? I told him I called him/referred to him because my GI doc has told me that my GP is from neurological involvement -- so I wanted his feedback...........well...I GUESS I GOT IT!

I am so sick and tired of playing middle man with all these docs. I TOLD THE NEURO to call the GI doc and talk to him since he is my doc and is part of my care! he said I need to make the calls.

NICE.

-cardiactec.

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He is taking a strong stand

EI saying"be assessed down in boston because they were all wrong in maine and that I would be making a huge mistake by having gastric pacing...."

you would be be wise to pay attention.

Dr. opinion are Dr. opinions. As far as the test, there is probally a reason he is not in aggreement.

For example: Cardiologist said I had pseudo seziures- see a shrink, the shrink ordered a SPECT scan for me, it came back, "possible seziure foci". I was DX with epilepsy. Put on heavy doses of carbamaziphine. I deleveopled cholitus (spelling) he said take imodium, I said no, change the med. He said get another Dr. I went to nerou who said, we do not DX elipepsy from a single positive result. Turned out to be NCS. And BTW the cardio did eegs etc. but not the SPECT scan.

On the other hand my shrink took a strong stand too. So the whole process is difficult, but you will get through it, unfornutantly the frustrations you are facing are not unusal.

IMO opinion , its a lot of work to get to the heart of the matter. AND we think a test is indisputeable, sometimes they are sometimes there are not- as I tryed to express.

Since you are "tired of all this" maybe give yourself a few months respite from the appts.

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I know we all get tired of playing the game with our doctors...but it's just that...they are not the one's suffering, we are. With that said, pick your self up and regroup. You know your body better than anyone else and we have to become LOUD some times to be heard, but we have to take our health into our own hands and push the issue some times. Get a couple of other options from other doctors. Take the results of your past tests with you and write everything down. In the end, hopefully the answer will be clear to you if not to them. Just remember we are all here to support you. Good luck.

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I cant take ''time off'' from docs appts even though i'm tired of all this...... i am losing crazy weight amounts and am getting very sick because of it.

the BOSTON GI doc i saw a few months ago was notified of all this (what's going on with me), has copies of all my GI tests, and told ALL the docs (yep, the neuro in boston) today THAT I DO have gastroparesis and that we need to proceed with getting it under control because it is obviously getting worse........

i have an appt scheduled with a GI surgeon. at this point, i know it's an extreme measure, but my symptoms and weight loss are pretty extreme, so it's not time to sit on this or take time off from appts.................

thanks for your concerns/comments. glad you guys are here to listen - and care.

cardiactec.

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Angela,

I'm sorry you're having such difficulty with your doctors. That has got to be so frustrating and aggravating. You can't afford to lose any more weight! Keep pressing your case until you get the help you need.

So I guess the botox didn't work, huh? :) I hope that a doctor can find a good and helpful solution for you SOON!

I'll keep you in my prayers. Hang in there and let us know how things go.

Rachel

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Hi Angela. I can understand your frustration with gastroparesis. It's definately no fun. Just wondering...do you know what your gastric empyting scan results were? I think it's something like half of the contents are supposed to leave the stomach in 90 minutes.

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well i went in to the hospital today ORIGINALLY to WORK and ended up in the ER as the patient..........so sick and weak from my stomach problems....................it is amazing though how helpful a few rounds of IV zofran can be!! MUCH BETTER than zofran pills.....

hanna, yep, i think you're right that normal time for 1/2 the food to empty out of the stomach is 90 minutes (hour and a half) ....my T 1/2 time on GES was 200 minutes, so a little over three hours.............dont know why my neuro says that THAT isnt gastroparesis. doesnt matter anyway because now THREE DIFFERENT GI docs have confirmed that I DO have it.............so dont know what the neuro is talking about....................what was your T 1/2 time hanna??

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Hi,

Just curious if you ever made it in to see Novak, Neuro at BMC..Excellent....Also, I have a great GI doc at BMC who is awesome as well. His name is Dr. Lowe....Sorry I havent been posting much, my stomache has been crazy also. :(

Jacquie

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