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@susanh824

Hi Geannydee,
My pancreas looked fine on ultrasound. After doing some intense research on my own, I do believe I have EPI. My doctor sent home the stool fat testing kit, and I am awaiting clarification from his nurse on how exactly to test. I was a bit overwhelmed by the need to eat 100-150 fats a day, and I used to love sweets!

How long have you been diagnosed? I’m a bit scared by you comments on the cost of the medication. I am already disabled by other causes and live on Social Security and a small pension. Am hoping that, if I do have EPI, that I qualify for help from the drug company, as well.

Wishing you the best of health’
Susan

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Replies to "Hi Geannydee, My pancreas looked fine on ultrasound. After doing some intense research on my own,..."

Oh Susan! I’m so sorry, I was hoping that I was wrong.
But PLEASE contact the company:
Prescription Assistance
I’ll get you the phone number to call.
You will need to send them proof of income and tax return along with a prescription from your gastroenterologist
There are also forms to complete and they can be faxed or mailed. I strongly encourage you to also contact the National Pancreatic Foundation. They have been a wonderful source of information. Please go to their website and you will see my story. Please mention me and tell them that I want you to have my email address! I will then give you my phone number.
It will take a few weeks for you and your gastroenterologist to determine your medication schedule and your nutrition is your biggest priority!!!
Maybe your insurance will cover a consultation with a registered dietitian. They are the best source for nutrition advice as they have the most education and are properly trained and licensed.
I am here and want to encourage you and congratulate you for advocating for yourself!!!
It’s a confusing and seldom heard of disorder.
But NOW you have a plan and HOPE!!!
🫶🏽

I had similar problems as you. I found out (through this site)that I had Mals (Mesenteric Artery Ligament Syndrome). I had epigastric pain, lost 35 pounds, digestive issues, and pain radiating to my back. No doctors diagnosed until I found a specialists. There’s a Facebook group Mals Awareness that is very informative. Hope you can find answers.