I would definitely mention to be testing for MALS. I have been suffering since 2015. This is my fourth GI doctor. This past Thursday I had a CT scan with contrast to confirm MALS. I am waiting for the results.

@tclarkkkk, I agree your symptoms sound like the classic MALS symptoms, but there are several other vascular entities it could be, all which we are here to help you get through! I would mention you are concerned both about MALS or another vascular problem causing your symptoms. A CT angiogram will be helpful, also a doppler ultrasound that looks at velocities. Testing can be hit or miss, as they need to see what is happening on inspiration and expiration. You must advocate for yourself, and mentioning a rare disorder can be intimidating for some physicians, be persistent until you fully understand what is happening in your body. I am not sure where you are located, but a vascular specialist should know something about MALS. Keep us updated, figuring out the diagnosis is the first step in this very long journey. I am so happy you found us! Stay strong!! You are not alone!

Hi Kari. Thank you for taking the time to read and respond. I am going to make an appointment with the cardiologist and he should be able to order those types of tests correct? I have no problem advocating for myself as a I am a super healthy 23 year old with no health history or anything major that runs in my family. So having these symptoms for months on end has not been fun! As you all know. I am located in Seattle!

So I tried to schedule with the cardiologist but since my PCP referred me there to get an Event Monitor to check for irregular heartbeats they will not see me because they are out of those right now.. So I believe I am just going to follow up with my GI doctor because he seems the most thorough right now with trying to figure out this pain. I guess I was just confused as to who to start with first GI or cardiology! Because my PCP says to just wait it out and change my diet for now.

@tclarkkkk , your symptoms do sound like MALS. @pfpurple post was pretty much what I would say. They say GI could diagnosis this, but I have not had much luck with GI's. I was diagnosed by accident going to the er with extreme pain. I was told I had IBS and I had ulcers so I figured just that and wanted pain meds. They insisted on doing ct scan and said my arteries were narrow and to go to a vascular surgeon. My primary referred me and then this long journey began. that was 2014. I had no idea what a difficult surgery and complicated surgery this was. I had both celiac and SMA involved. Did well for a few months and then started to narrow again. Then had stents put in 2015 each artery, then just this past Oct. had a balloon in celiac. Everyone is different, but the more you hear, the more knowledge you gain and can be helpful. This is a great site. @kariulrich is awesome and so knowledgeable. Good luck and let me know if you have any questions. I would push for a ct scan even from the pcp to start. HOpe that helps...

Had CT done twice already with contrast mind you, the second time the tech pushed the syringe in all at once I felt like I was going to burst into flames and stop breathing. I have so much going on in my personal very
personal life wright now I don't have time for this believe it or not. But I be back I hope I just last till I can!

Dbarselow

Is there a list of vascular entities?