Does anyone have nesidioblastosis?

Posted by lolaestelle @lolaestelle, May 28, 2023

Trying to find out if anybody has nesidioblastosis?

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I have had it for years for the same reasons as you. There is nothing we can do. I can’t go over 7carbs at this point. I have to use Dexcom 7. If I didn’t have this I would have probably not survived. After having this for many years it takes a toll. I have to stop driving and working.

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@hana51507

I am starting Octreotide today. Its other name is Sandostatin! This one is 10mg LAR. “Long acting release” you take it ever 28 days. If you don’t mind, can you share your decision! I will share my results of the Sandostatin

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I have decided to not take the Octreotide and proceed with getting approval for the TORe procedure! Waiting further information from my Dr. Yes please keep me posted on your results!!!

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@jennylynn72

I have decided to not take the Octreotide and proceed with getting approval for the TORe procedure! Waiting further information from my Dr. Yes please keep me posted on your results!!!

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What is TORe procedure?

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