I joined MALS PALS and so glad I did! There's comfort in sharing in our common malady and potential treatments – as a Team. Thank you!
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Thanks @kariulrich A MALS MRI protocol was developed and implemented specifically due to my case and for use with future potential ones, as nothing of the like existed within our organization prior. The MRI was on Wednesday morning of this past week and lasted around two hours. Friday evening, the Vascular surgeon discussed results with me. This second round of imaging reconfirmed initial CT indicating celiac compression. I was discharged Saturday midmorning. Tomorrow I plan to research other institutions with physicians specializing in our shared disease state and go from there. My symptoms have become progressively more acute over course of the past several months. My hope is to receive treatment by a specialist Team soon.
Thanks for your time and support!
Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician said he is still not sure it is MALS because I'm not losing weight. I'm actually in the hospital now, admitted last night from ED. I was sent to ED by PCP, who was concerned my pain could mean ischemia/organ damage given severity and duration I've been in this state. I have many of the symptoms mentioned in this forum – severe abdominal pain (both sides but predominantly left, under/around ribs and radiating to back) nausea lasting for hours and days, shortness of breath, weakness, chest pain, headaches. A CT from an ED visit in September of 2018 revealed stenosis and poststenotic dialation. What a journey to get to this point. Its been an uphill battle, really. I've had to be my own advocate – reading, researching, insisting on being seen and being taken seriously when dismissed and pushing for more testing when something was ruled out. Most important is to maintain hope. I really want to consult another physician/Team. Can anyone give some recommendations? I believe UPMC is the next closest health system to me. Thanks!