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Booked Mayo for My Son - Now Frightened

Just Want to Talk | Last Active: Nov 1, 2018 | Replies (26)

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@devsmaj

Thank you, Colleen. My son has been scheduled to “Internal Medicine” but no further info from there. From what I understand, he will be assessed by a physician there, then tests and other doctors are scheduled based on that assessment. I have to put $7000 USD down before we even arrive (almost $10K CAD). The tests and procedures my son has had here in Canada are all gastroenterology-related: 3 gastroscopies/endoscopes, barium swallow, ultrasound, 24 hr ph study, impedance test, gallbladder and liver study (HIDA scan), manometry test, MRI of pancreas and midsection, 12 biopsies of stomach, polypectomy (stomach), H Pylori test, test for celiac, numerous blood tests, we have tried low fodmap diet, gluten free diet, ... i may be forgetting some. All basically gastro. I am beginning to think this is not gastro-related as i dont think there are any more tests that could be done. He is nauseated 24-7 (no nausea medications work), he does have a very weak esophageal sphincter but no acid reflux symptoms, is very slender and lost an additional 30 lbs since this started, has low stress tolerance (and once had very high tolerance - he was a competitive athlete), trouble sleeping, back pain, muscle cramping (not severe).... Nausea is the #1 concern. Thanks everyone for listening. Im just scared that Mayo Clinic - the best medical care in the world - wont be able to help him either. Yes - I am trying to think positive but am so scared. They HAVE to find out what this is. They just HAVE to.

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Replies to "Thank you, Colleen. My son has been scheduled to “Internal Medicine” but no further info from..."

I would be nervous if I I had to come up with 7000.00. Have you heard of medium accurate ligament disease support group (MALS) on Facebook? Many of us with this rare condition have found ourselves in the same situation. I personally would cut the chase and get a local gastric doctor for a referral to a vascular specialist and have an angiogram done. If I would of known about MALS years ago it would of saved me a lot of money and peace. An angiogram is the only way to diagnose this. I am not a doctor but I would highly suggest check out this group and weigh all options before forking over all that money. Good luck with whatever you do. I hope you get some definate results so you can go on from there.