I don't understand how people can become doctors without the mindset of wanting to help people. As my illness becomes more hard on me, I find myself looking for others who may feel how I feel or have been where I've been. And regardless of the illness, I've found so many telling their stories about how doctors have told them that they aren't sick enough before actually checking properly. Smh
im sitting here with my mom, in tears. thank you so much beautiful. im so glad to know that im not alone in this journey. pots, eds, gp, mals, etc. its so hard. sending you love and light!
I was recently diagnosed with MALS. Whether I ate or not, I had nausea, heartburn, and dull pain, and I couldn't sleep well. Sometimes I feel sick and can't move. I passed out once due to stomach pain. Burning sensation under left rib. I sometimes had pain under my left breast. Even though I was breathing, I felt like I was starved of oxygen. Rather than pain after eating, I always feel pressure in the pit of my stomach. Symptoms seem to vary depending on the person. Her body type is also fat. I was told that there was almost no blood flow when I exhaled, and that my blood vessels were almost completely occluded. My next surgery is scheduled. At the first hospital, various tests were performed, but no abnormalities were found. I was also disappointed when I was told at the hospital that I had a mental illness. It seems that only doctors who know about this disease can understand. It seems that many people go undiagnosed, but in my case I was lucky that the cause was discovered soon after the onset of symptoms. I hope that awareness will spread in the medical field so that more people can be diagnosed with this disease quickly. Lately I've been feeling a lot of pressure in my pit of the stomach, and I want to have surgery as soon as possible.
OMG I have the exact same symptoms in my left rib and breast! I’m going for my MRI tomorrow. Have been dealing with this for almost a year; all tests thus far negative
Thank you so much. I was just diagnosed today. FINALLY. My gastroenterologist is phenomenal and ordered a ct scan abdominal mass/pelvic (drinking barium AND dye injection). It all became clear. Thank God somebody is listening. It feels like a painful TWIST in my stomach. Just waiting to get a call from the vascular surgeon. Thanks again!
Just diagnosed with MALS diagnosed with POTS and EDS several months ago! I’m so freaking happy that I have MALS and they can do the surgery!! It’s made all the difference for so many people and I’m so ready for it! Rn there is a 3-4 month wait but your story will encourage me all through my waiting! Praise the Lord for your healing and grace in suffering!
I was diagnosed with MALS last year. Our stories are so similar. I have had the pain and nauseous for several years before being diagnosed, I think the worst part was being told it’s all in my head with suggestions to get therapy. I am so happy to hear that you can finally enjoy life without that horrible pain. I still dread eating and sometimes just getting up in the morning and dealing with the constant nausea. Best of luck...so happy for you!
About in tears watching this... I've been dealing with nausea and stomach pain for over 6 months now. I've seen countless doctors and I've been told over and over that it's anxiety and stress-related. I *know* I didn't used to have pain like this and I know something is truly wrong. After tons of tests my doctor decided that removing my gallbladder might help. He wanted to do an ultrasound to check for MALS as a last resort, and they found that my artery is being compressed. They didn't tell me any more than that, but I'm so nervous to hear the actual numbers and to see if I qualify for surgery because I can't keep living like this. Thank you for sharing your story, it's so comforting to hear that I'm not alone. ❤️
Hi, I'm so glad that you posted This! I have shared it on Facebook, My daughter is still out of town, because of bad weather. She has more testing scheduled for next week! Tell your mom hi for me!
Thank you so much for sharing! I have POTS, EDS, MCAS, and a ton of other issues. I’ve spent years now trying to find answers for my chronic stomach pain, and excruciating pains after eating. This may be an answer for me! Thank you!
Thank you for posting your story. My daughter has had the symptoms you expressed for years and just like you we have been told it's constipation, it's anxiety, it's all in your head, see a therapist. Then as you mentioned in your story, we found the right doctor and my daughter was diagnosed with MALS and POTS. She is on the road to recovery after 6 years of suffering and seeing an enormous amount of Doctors and GI Specialists. I wish you the best in health moving forward!
I have never related to a video as much as I have to this one! I have Ulcerative Colitis, POTS, Anemia, and Renal AVM and it has taken years to get diagnoses but I was so grateful to get every diagnoses!!
Kati, I’m so glad you found answers and solutions. Like many who come in on here I went to Promesa same thing but I had neurogenic Mals. So excited for your future.!
Thank God that you feel better. I been having stomach problems for years and my doctors couldn't figure out what was going on until I got really sick and ended up at the School of Medicine to make it short and I was diagnosed with chronic pancreatitis, 10mm cyst in the pancreas along with others on left kidney and liver, celiac stenosis, misenteric ischemia, and MALS. I had two stents in the pancreas and I am currently scheduled to see the surgeon. I understand your pain because it's offord and the nauseas are worst. I lost 35 pounds and I hate it . I wish you continued feeling well.
Wow, your story sounds like mine. I was diagnosed last week with MALS and have an appointment scheduled with a vascular surgeon in a few weeks. I was lucky to get into the Mayo clinic to see the fourth gastro doctor! Finally he listened to me and was concerned about the 50 pounds of weight loss. You really have to fight for yourself.
Im turning 25 this year, i have been searching for a diagnosis for 8 years. since i was a kid. the pain i have experienced has ruined my life. today after a random CAT scan my gastro informed me that it looks like i may have MALS but is getting a second opinion / scheduling an ultrasound. I dont want to get my hopes up becuase I have always been let done... 8 years if misdiagnosis... But i so hope it is, and finally i'll get a second chance at life
Ive been dealing with these symptoms for six years at different levels. Greys anatomy brought me awareness to MALS and now I am scheduled to meet with a Mals doctor in a week! Anyone have a bunch of food allergies as well? i dont know if its connected and if theyll ever go away but I wonder sometimes...
Me... I had MALs surgery 9 years ago and just found out my velocities are quite poor again. I saw an immunologist around 3 years ago and stuck to a strict diet. I believe eliminating foods that create inflammation is a huge benefit.
Kudus to your strength woman !! Very very proud of your for not giving up and taking the gaslighting bait that your crazy Cuz your not !! Now I understand eating disorders are real, and anorexia and bulimia is a terrible thing to deal with but Just like when people fake a disability and then get disability income, which makes it harder for people with real disabilities to get it Same is true for eating disorders All these women in 20s and 30s with eating disorders that they're not honest about, especially when they lie and say they don't have it to doctors MESS THIS UP FOR EVERYONE ELSE!!!!! Dr. c a skinny frail middle-aged woman and assume she's not eating on purpose ! We'd LIKE to eat we LOVE to eat we're always back and forth between hungry and violent heaving spasms and puking It's an exhausting way to live It IS In our arteries, like mesenteric, it's in our stomach, it's in our pancreas, it's in our ribs It is NOT in our heads !! I applaud you and your story helps me a lot it took over 10 years to get this diagnosis mostly because it wasn't as wrapped up as it is now
This story is incredible! I get these problems as well, the blacking out is the scariest part! Like what if it happens while I am driving a car or something! I will definitely ask my docs about this.
This video meant to world to me tonight. I dear friend has been searching for answers for a decade. Finally got a proper diagnosis and is having surgery tomorrow in Cleveland. Your video is reassuring.
They have some really good doctors in Cleveland and I’ve heard nothing but great news from the patients I know that went there! I’ll be praying for you and your friend!
Thanks so much for sharing Katie ❤ I also started experiencing symptoms in 2014/2015, and just brushed off as IBS / constipation / low blood pressure / anxiety. Totally relate to the numerous “normal” tests and wondering “well what is wrong with me”. After 8yrs, just had my MALS CT angiogram abdomen scan. Awaiting results! 🤞
Same thing girl. I pass out when I eat sugar and carbs at all. Eating is horrible for almost 2 years. And they all think im crazy. I finally am going to see a vascular surgeon and im hoping they will find it. Very discouraged because i can't live normal and i feel so out of it all the time.
Thank you for sharing your story. I am in the process of possibly getting diagnosed with SMAS or MALS. been having intense symptoms for a year. Not nausea so much as horrible painful indigestion and lack of appetite. Chronic gastritis that refuses to heal. Bile reflux. Hoping to get an answer and a treatment plan that actually fixes me.
I’m only a minute in the video and that sounds EXACTLY like me. I get SUPER nauseous in the morning and it usually lasts half the day... sometimes longer, but usually gone by 1 or 2 pm. I have no stool changes too. #shook Definitely bringing this up to my doctor.
I have MALS and I swear it’s like you read my mind omg. Been through the SAME exact thing. Still am going through it. Just got diagnosed with MALS and may have POTS as well. Will hopefully have surgery this month!
Just got told I have mals and now awaiting surgery I have some of your symptoms mostly nausea and pain can’t wait to get it fixed I’m 61and lost 60 lbs and enjoyed your video and will let you all know how I do as soon as covid lets up they can work on me but would’ve liked to know about the cut on my stomach they are planning on doing a little scary
i was just diagnose with MALS and next month on april 22nd i have to get surgery and i’m super nervous but i have the same symptoms u had. ur video was very reassuring thank u for posting about it ❤️thank u for sharing your story
Had you had CTs done before? Had they come back normal? Asking because my boyfriend is dealing with very similar symptoms and has been to the ER multiple times for pain. Every time they do a CT it comes back completely normal. All tests come back completely normal! Thank you.
Thank you for sharing your video. My daughter is 22yrs old and has been dealing with stomach pain for a long time. Her pain begins after eating and it’s at the top of her stomach (epigastric) along with nausea. Her GI dr had ordered everything from a gastric emptying test, ultrasound, HIDA scan, EGD twice, barium small bowel follow through and labs. Everything came back normal with some gastritis and IBS. She has been given so many GI meds and nothing seems to help. We heard about MALS on an episode of Grey’s Anatomy! We have since looked it up and did some research. We think she may have this. Now we’re trying to find a specialist in San Antonio Texas who is familiar with MALS to make an appointment.
A really good resource for finding a doctor/surgeon who treats MALS is a group on Facebook called "MALS Pals". There they have an updated list of all the surgeons in each state and their approach to surgery. It's also a great way to find other people more local to you who can empathize what you're going through and maybe give you some advice. Best of luck for you and your daughter! Being sick is definitely not fun!
I know this was posted a long time ago but thank you! I have pots, eds and mcas and am suffering similar gi symptoms. It's still fairly recent (only developed pots suddenly 8 months ago) so most doctors are dismissing me cause I'm 'chubby' but I'm scared if they dismiss it then I'm just going to end up in a similar situation where I dramatically drop weight and have such bad health consequences after. arghhh
My 19 year old Daughter has been sick like this for the last couple of months. We’ve had her in 9 times with 3 doctors. Abdominal X-ray was normal. EGD done on Friday showing lots of inflammation. She can’t even take the Carafate without getting nauseated. Plus the Protonix and Zoforan. She’s down to 108 pounds from 125. She’s short of breath and weak from not eating barely anything. She is back in the ER now. She’s had to get IV fluids several times for dehydration and IV nausea meds. She’s so upset and feels like she just wants to die. I’m getting really worried. She hasn’t had enough nutrition for over a week. The first bout she had was in November for 3 weeks, took Prilosec for 6 weeks and it was gone for about a month and now it’s back going on 2 weeks again and worse than last time. I’m going to ask the Doctor about this. I’m so sorry you had to go through all of this misery and that you were doubted.
My 12 year old daughter has had extreme abdominal pain and nausea for a year. Her GI doctor also diagnosed her with IBS-Constipation after all of her tests: x-rays, HIDA-scan, 2 ultrasounds, colonoscopy, endoscopy. He said everything looked good, and he looked at my face which was so disappointed. He said this is good news. I told him no it wasn't. I said my little girl went from a normal happy singing child to a bedridden child within 1 year. He says he wants her to see a therapist. I told him that this is not in her head. She is missing a lot of school. Her doctor wants her homebound, but my daughter loves school and her friends. She fights and struggles to get dressed to just go to school. She can't even describe the pain on a pain scale anymore. We have been to the ER twice and when she is administered morphine, it does absolutely nothing for her pain. It just makes her sleepy. The ER doctor told me they really can't do anything for her. It feels like a hopeless situation. She has an appointment the first week of this new year and I am going to tell her GI that I suspect MALS and pray he will look into it. Thank you for your video. It gives me a glimmer of hope.
LAURA BIRDWELL Did you find out what the diagnosis is? My 19 year old is going through hell right now, trying to figure out what’s going on. She’s so miserable right now and I feel so hopeless.
Hey girl, Thank you so much for this video! I have MALS and pots too. I have Ehlers Danlos syndrome ( EDS). EDS can cause both and a million other things. Maybe you’d want to rule out EDS. Hopefully you don’t have it but just in case, it’s good to know. Take care 💖💜💝
Yeah everybody wanted to tell me it either they didn’t know, it was constipation, or in my head… definitely questioned my sanity a lot on top of everything else
Oh my Gosh. I am always constantly in a fetal position. I am having this same issue. It started in November 2017 and I ended up with a IBS diagnosis but I am not better.
Thank you for the video i just found out in January of this year that I have celiac artery compression syndrome and the pain started between 2013-2015 when i was in highschool i was constipated for a long time and they automatically assumed that I had chromed disease. Which I didn't then they also thought it was me taking ibprophen which it wasn't. And then my pain stop 2020 came in January and I past out from so much pain in my stomach at Starbucks when the ambulance had to pick me up and I found out from a specialist that I had celiac artery compression syndrome. I totally understand how you feel
celiac artery compression is the exact same thing as MALS. www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001 on the overview part it says other names for MALS. so you definitely do understand how she feels.
Thank you for your video! I'm pretty sure this is what I have but not been tested for it. One question I have though is did heat help you with your stomach pain? Cause with mine I'm either in a very very hot bath or laying on top of a heating pad,I mean to the point where I have burned my stomach. I have permanent burn marks I needed THAT hot to help..did you have to go through that? I'm reaching out cause I am lost. No dr can find out what it is..
My dr says I look good on paper but he knows I’m sick. Finally a test showed that I have adrenal insufficiency and I’m on meds for that but I’m getting worse I’m almost home bound and I’m in bed most of the day.
I diagnosed w POTS in October and lost 60 lbs in 6 months. I cant gain weight and having malnourishment. Eating hurts and Im not hungry. So many doctors say its in our head.. Excerise hurts! Why I want to cry when nurses tell us have your tried physical therapy? I am wondering if I have MALS? It hurts worse when I breathe, swallow and when I sit up.
My celiac artery stenosis was found on a Abd CT scan with dye. I have a moderate amt of stenosis. Haven’t learned yet if I have the ligament stricture part. I have had years of problems with high BP ,with improvement after I had a left adrenalectomy tumor with gallbladder out at the same time years ago. It would be helpful if you would be very specific on what your ‘pain’ is like . Just saying you have pain does not do it. Did you have epigastric burning up into your ears, did you have a pinching pain when you would turn on your side, were you able to drink a lot of water, or just sips , would you feel cardiac heart palpitations as ready to faint if you sat or leaned over in a position that put pressure on your diaphragm.could you lean over and reach your toes with or without feeling short of breath. We need more specific symtoms. Pain does not do it for this problem.
I’m currently waiting to see a GI doctor because I got an ultrasound done for my heart and when the doctor went down towards my stomach he saw a pinched nerve or something which makes him believe I could I have MALS. It’s frustrating because I went in for one thing and came out with a different theory. But it is somewhat making sense. Last year I had such bad stomach pain I went to the ER with stomach pain like never before (literally crying) and said oh you’re just constipated and gave me laxatives and morphine (didn’t really take away the pain).It’s a year later and I still sometimes get that pain even after I use the restroom. Now I’m hoping it turns out to just be I have constipation issues. I guess we will find out soon.
Anyone ever have the MALS laparoscopic surgery? What was your experience did it help? My diagnosis was given a year later after I asked for a CT of my abdomen. I noticed in my test results from a year ago they recommended a second ultra sound but my doctor did't do it. Finally I said listen I know something is wrong, I've met my out of pocket for the year please run all the tests that will help. The gastric emptying scan fine, but the Abdomen CT found the MALS. I've heard they often just recommend to deal with it instead of having the surgery. I read somewhere the surgery for MALS has like a 60 -70% success rate? Did it work? I also just got married and don't want to try to get pregnant with all this but I am 35.
Mine is scheduled for next week, don't avoid it do it. I had eggs for a straight week and all my symptoms went away. It was a night and day difference so I couldn't live without it
This is what we are going through with my daughter. Diagnosed with hEDS, pots, sibo. Now having mcas issues. But I suspect mals too. But even with the diagnosis, all we get is 'it's all in her head' irs anxiety, do meditation
I just got an ultrasound and told I have MALS. Need CT scan though to confirm maybe. However I have no nausea after eating. My symptoms are different than many others, so not sure.
I was diagnosed from a CT scan. I have no nausea either. I only have pain when I'm completely full so I never eat until I'm satisfied. And I get the dizziness and being off balanced.
Hey cute and brave lady, I am from Germany (male, 29 years) and the symptoms are sooo similar to my situation!! Sorry for my bad english, but did you had this problems too even after just drinking a glass of water? In my situation just drinking a glass of water leads to big nausea and pain. Because of a Gastroparesis the water stays in the stomach for a long time.. Really scary. In 2 weeks I get an ultrasonic examination, so I will know soon, if it is the MALS thing or not :/
hey, i was just diagnosed with both MALS and SMAS, another compression affecting my stomach and intestines. i meet with a doctor next week to decide on the next steps so i really don’t know much yet. but i just wanted to say drinking a glass of water often hurts for me! like sharp pains all over my abdomen and it makes me nauseous too. so it might be a MALS thing? i have other conditions too so i’m not completely sure. did the ultrasound end up showing anything?
Im currently having all of the MALS symptoms but havent gotten a diagnosis. Ive lost a ton of weight. I had my 3rd baby a year ago and since having her i just cant stop losing weight without even trying. Its super painful to eat or deink ANYTHING. Including water! I cant handle this anymore. Im withering away and i hate it! I weighed 130 when i gave birth to my youngest. I was kinda chunky to. But now you can see my hip bones and none of my clothes fit. I dont know how much more i can handle. But my drs cant find anything. I have an appt tomorrow but its kver the phone since the corona virus is going on and now i probably wont be tested for mals since the virus is spreading. 😭 im sick of being in pain.
ik the struggle i lucky got diamond within a month of have symptom but not my doctor even know about it so the don’t look for it just push through the pain
Could you please let me know who your surgeon was? I've been kinda diagnosed for MALS but my doctor is not sure if that's the main reason for my pain....and I live in LA!
Have you had a fast heart rate or hear your heart beat from your chest? I have MALS I believe. “Anxiety” they say. I don’t believe it. Ive have passing out episodes since 2016.
I read a study saying this is more common in northern Europeans as well as some French So French , Irish , English , Scottish , Amy Viking ancensty this is more common Are you any of those things? Not that this can't happen to Asians or African-Americans But I'm noticing a lot of really weird variations in arteries and vasculitides of women of this ancestry and they don't present with problems until 20s or later
I mean postural orthostatic hypotension can cause all types of weird things with digestive organs so you know it's back to the chicken or egg what caused what Because compression in those places can cause blood pressure issues, vice versa
Where did you go for your surgery? Who do I call? I’ve lost about 60lbs. Please help me. I’ve been having all of these. I’m gonna die if nobody helps me. I just want to gain weight. And feel better.
@@SkeppGlocc My partner has this but unable to get the surgery. He has had success with eating smaller meals more frequently throughout the day, standing up after meals, and stopping eating 6.5 hours before bedtime. No laying down during the day. At his most severe, he had to eat a tablespoon of food every 15 minutes (nothing acidic, so no meat, tomatoes, black pepper, coffee, etc, he used rice + beans + olive oil, potatoes, anything soft that breaks down quickly) to get enough food down during the day so he could stop losing weight. Once he was able to get his stomach better (no more pain from ulcers) he started expanding his diet (now vegan) and was able to eat more regular meals. He had to very slowly scale up the size of his meals and still doesn't eat until he is full; overeating at any point can set him back weeks of progress. He also found that taking Allegra (at the normal dose) was helpful. I hope this helps you.
Hi I’m 16 and I have been waking up nausea and vomiting every morning for the past 3 months only in the morning to like 12 and I lost a lot of weight to where everyone can notice in school ,I also have abdominal pain in the top middle of my stomach and all my test came back clean they then diagnosed me with functional vomiting just until we can figure out what’s going on if anyone has anything that might help please comment
I'm concerned about your pots. If you have one compression, you're more likely to have more. My daughters pots is from the compressions across lower abdomen. Blood is going down to legs, but only 40 percent is going back to her heart, and less to her brain, causing the pots. Her renal vein is compressed causing blood to back flow to spine, to brain, causing the constant pressure migraine. She didn't have classic mals, but does have may thurner, nutcracker, among others. He had her eat, then scanned her duodenum. It's not emptying, so that's causing her feeling full, pain and nausea. I'm suspecting nuero mals. He doesn't check for that
I don't understand how people can become doctors without the mindset of wanting to help people. As my illness becomes more hard on me, I find myself looking for others who may feel how I feel or have been where I've been. And regardless of the illness, I've found so many telling their stories about how doctors have told them that they aren't sick enough before actually checking properly. Smh
im sitting here with my mom, in tears. thank you so much beautiful. im so glad to know that im not alone in this journey. pots, eds, gp, mals, etc. its so hard. sending you love and light!
same i want friends who have it
❤💕❤
I was recently diagnosed with MALS. Whether I ate or not, I had nausea, heartburn, and dull pain, and I couldn't sleep well. Sometimes I feel sick and can't move. I passed out once due to stomach pain. Burning sensation under left rib. I sometimes had pain under my left breast. Even though I was breathing, I felt like I was starved of oxygen. Rather than pain after eating, I always feel pressure in the pit of my stomach. Symptoms seem to vary depending on the person. Her body type is also fat. I was told that there was almost no blood flow when I exhaled, and that my blood vessels were almost completely occluded. My next surgery is scheduled. At the first hospital, various tests were performed, but no abnormalities were found. I was also disappointed when I was told at the hospital that I had a mental illness. It seems that only doctors who know about this disease can understand. It seems that many people go undiagnosed, but in my case I was lucky that the cause was discovered soon after the onset of symptoms. I hope that awareness will spread in the medical field so that more people can be diagnosed with this disease quickly. Lately I've been feeling a lot of pressure in my pit of the stomach, and I want to have surgery as soon as possible.
OMG I have the exact same symptoms in my left rib and breast! I’m going for my MRI tomorrow. Have been dealing with this for almost a year; all tests thus far negative
Thank you so much. I was just diagnosed today. FINALLY. My gastroenterologist is phenomenal and ordered a ct scan abdominal mass/pelvic (drinking barium AND dye injection). It all became clear. Thank God somebody is listening. It feels like a painful TWIST in my stomach. Just waiting to get a call from the vascular surgeon. Thanks again!
Have u got relief now from symtoms
Just diagnosed with MALS diagnosed with POTS and EDS several months ago! I’m so freaking happy that I have MALS and they can do the surgery!! It’s made all the difference for so many people and I’m so ready for it! Rn there is a 3-4 month wait but your story will encourage me all through my waiting! Praise the Lord for your healing and grace in suffering!
R u now symtom free
I was diagnosed with MALS last year. Our stories are so similar. I have had the pain and nauseous for several years before being diagnosed, I think the worst part was being told it’s all in my head with suggestions to get therapy. I am so happy to hear that you can finally enjoy life without that horrible pain. I still dread eating and sometimes just getting up in the morning and dealing with the constant nausea. Best of luck...so happy for you!
About in tears watching this... I've been dealing with nausea and stomach pain for over 6 months now. I've seen countless doctors and I've been told over and over that it's anxiety and stress-related. I *know* I didn't used to have pain like this and I know something is truly wrong. After tons of tests my doctor decided that removing my gallbladder might help. He wanted to do an ultrasound to check for MALS as a last resort, and they found that my artery is being compressed. They didn't tell me any more than that, but I'm so nervous to hear the actual numbers and to see if I qualify for surgery because I can't keep living like this. Thank you for sharing your story, it's so comforting to hear that I'm not alone. ❤️
Hey! Wondering... did you ever get yours surgery
Thank u for sharing ur story!! This is such a beautiful journey and I’m SOOO glad u are doing better.
Hi, I'm so glad that you posted This! I have shared it on Facebook, My daughter is still out of town, because of bad weather. She has more testing scheduled for next week! Tell your mom hi for me!
Thank you so much for sharing! I have POTS, EDS, MCAS, and a ton of other issues. I’ve spent years now trying to find answers for my chronic stomach pain, and excruciating pains after eating. This may be an answer for me! Thank you!
Thank you for posting your story. My daughter has had the symptoms you expressed for years and just like you we have been told it's constipation, it's anxiety, it's all in your head, see a therapist. Then as you mentioned in your story, we found the right doctor and my daughter was diagnosed with MALS and POTS. She is on the road to recovery after 6 years of suffering and seeing an enormous amount of Doctors and GI Specialists. I wish you the best in health moving forward!
Wow..
What a journey you have been on, young lady! You are so strong. ❤
OMG you were given the run around. thank you for sharing for those of us dealing with this as well.
I have never related to a video as much as I have to this one! I have Ulcerative Colitis, POTS, Anemia, and Renal AVM and it has taken years to get diagnoses but I was so grateful to get every diagnoses!!
Kati, I’m so glad you found answers and solutions. Like many who come in on here I went to Promesa same thing but I had neurogenic Mals. So excited for your future.!
Thank you so much for sharing your story! I know that it will help many. God bless you!🙏🏻❤️
Thank God that you feel better. I been having stomach problems for years and my doctors couldn't figure out what was going on until I got really sick and ended up at the School of Medicine to make it short and I was diagnosed with chronic pancreatitis, 10mm cyst in the pancreas along with others on left kidney and liver, celiac stenosis, misenteric ischemia, and MALS. I had two stents in the pancreas and I am currently scheduled to see the surgeon. I understand your pain because it's offord and the nauseas are worst. I lost 35 pounds and I hate it . I wish you continued feeling well.
Wow, your story sounds like mine. I was diagnosed last week with MALS and have an appointment scheduled with a vascular surgeon in a few weeks. I was lucky to get into the Mayo clinic to see the fourth gastro doctor! Finally he listened to me and was concerned about the 50 pounds of weight loss. You really have to fight for yourself.
Im turning 25 this year, i have been searching for a diagnosis for 8 years. since i was a kid. the pain i have experienced has ruined my life. today after a random CAT scan my gastro informed me that it looks like i may have MALS but is getting a second opinion / scheduling an ultrasound. I dont want to get my hopes up becuase I have always been let done... 8 years if misdiagnosis... But i so hope it is, and finally i'll get a second chance at life
Ive been dealing with these symptoms for six years at different levels. Greys anatomy brought me awareness to MALS and now I am scheduled to meet with a Mals doctor in a week! Anyone have a bunch of food allergies as well? i dont know if its connected and if theyll ever go away but I wonder sometimes...
Me... I had MALs surgery 9 years ago and just found out my velocities are quite poor again. I saw an immunologist around 3 years ago and stuck to a strict diet. I believe eliminating foods that create inflammation is a huge benefit.
Kudus to your strength woman !!
Very very proud of your for not giving up and taking the gaslighting bait that your crazy
Cuz your not !!
Now I understand eating disorders are real, and anorexia and bulimia is a terrible thing to deal with but
Just like when people fake a disability and then get disability income, which makes it harder for people with real disabilities to get it
Same is true for eating disorders
All these women in 20s and 30s with eating disorders that they're not honest about, especially when they lie and say they don't have it to doctors
MESS THIS UP FOR EVERYONE ELSE!!!!!
Dr. c a skinny frail middle-aged woman and assume she's not eating on purpose !
We'd LIKE to eat we LOVE to eat we're always back and forth between hungry and violent heaving spasms and puking
It's an exhausting way to live
It IS In our arteries, like mesenteric, it's in our stomach, it's in our pancreas, it's in our ribs
It is NOT in our heads !!
I applaud you and your story helps me a lot it took over 10 years to get this diagnosis mostly because it wasn't as wrapped up as it is now
This story is incredible! I get these problems as well, the blacking out is the scariest part! Like what if it happens while I am driving a car or something! I will definitely ask my docs about this.
Thank you so much for sharing your story.
This video meant to world to me tonight. I dear friend has been searching for answers for a decade. Finally got a proper diagnosis and is having surgery tomorrow in Cleveland. Your video is reassuring.
They have some really good doctors in Cleveland and I’ve heard nothing but great news from the patients I know that went there! I’ll be praying for you and your friend!
How is your friend doing since surgery?
Thanks so much for sharing Katie ❤ I also started experiencing symptoms in 2014/2015, and just brushed off as IBS / constipation / low blood pressure / anxiety. Totally relate to the numerous “normal” tests and wondering “well what is wrong with me”. After 8yrs, just had my MALS CT angiogram abdomen scan. Awaiting results! 🤞
Have u did surgery?
You are one tough kid with a great attitude.
You have explained your situation so well and very easy to understand, thank you
Hi Katie ❤ thank you for sharing your story, you are amazing. Would love to know how you are doing now? Really hope you are well 🙏🏻
Same thing girl. I pass out when I eat sugar and carbs at all. Eating is horrible for almost 2 years. And they all think im crazy. I finally am going to see a vascular surgeon and im hoping they will find it. Very discouraged because i can't live normal and i feel so out of it all the time.
God bless you young lady may God bless you and use you for the glory of his kingdom I pray your still doing good in jesus name thank you
Thank you for sharing your story. I am in the process of possibly getting diagnosed with SMAS or MALS. been having intense symptoms for a year. Not nausea so much as horrible painful indigestion and lack of appetite. Chronic gastritis that refuses to heal. Bile reflux. Hoping to get an answer and a treatment plan that actually fixes me.
I’m only a minute in the video and that sounds EXACTLY like me. I get SUPER nauseous in the morning and it usually lasts half the day... sometimes longer, but usually gone by 1 or 2 pm. I have no stool changes too. #shook Definitely bringing this up to my doctor.
I have MALS and I swear it’s like you read my mind omg. Been through the SAME exact thing. Still am going through it. Just got diagnosed with MALS and may have POTS as well. Will hopefully have surgery this month!
Did you ever get the surgery
Just got told I have mals and now awaiting surgery I have some of your symptoms mostly nausea and pain can’t wait to get it fixed I’m 61and lost 60 lbs and enjoyed your video and will let you all know how I do as soon as covid lets up they can work on me but would’ve liked to know about the cut on my stomach they are planning on doing a little scary
i was just diagnose with MALS and next month on april 22nd i have to get surgery and i’m super nervous but i have the same symptoms u had. ur video was very reassuring thank u for posting about it ❤️thank u for sharing your story
Who did your surgery and how have you been doing since?
Thank you
Thank you for sharing.
😊
Had you had CTs done before? Had they come back normal? Asking because my boyfriend is dealing with very similar symptoms and has been to the ER multiple times for pain. Every time they do a CT it comes back completely normal. All tests come back completely normal! Thank you.
Thank you for sharing your video. My daughter is 22yrs old and has been dealing with stomach pain for a long time. Her pain begins after eating and it’s at the top of her stomach (epigastric) along with nausea. Her GI dr had ordered everything from a gastric emptying test, ultrasound, HIDA scan, EGD twice, barium small bowel follow through and labs. Everything came back normal with some gastritis and IBS. She has been given so many GI meds and nothing seems to help. We heard about MALS on an episode of Grey’s Anatomy! We have since looked it up and did some research. We think she may have this. Now we’re trying to find a specialist in San Antonio Texas who is familiar with MALS to make an appointment.
A really good resource for finding a doctor/surgeon who treats MALS is a group on Facebook called "MALS Pals". There they have an updated list of all the surgeons in each state and their approach to surgery. It's also a great way to find other people more local to you who can empathize what you're going through and maybe give you some advice. Best of luck for you and your daughter! Being sick is definitely not fun!
This doctor in Dallas is said to be the "go to guy" for MALS in Texas. www.texasvascularassociates.com/our-physicians/john-f-eidt-md-rvt-rpvi-facs/
Thank you!
First comment and view 😘
I know this was posted a long time ago but thank you! I have pots, eds and mcas and am suffering similar gi symptoms. It's still fairly recent (only developed pots suddenly 8 months ago) so most doctors are dismissing me cause I'm 'chubby' but I'm scared if they dismiss it then I'm just going to end up in a similar situation where I dramatically drop weight and have such bad health consequences after. arghhh
My 19 year old Daughter has been sick like this for the last couple of months. We’ve had her in 9 times with 3 doctors. Abdominal X-ray was normal. EGD done on Friday showing lots of inflammation. She can’t even take the Carafate without getting nauseated. Plus the Protonix and Zoforan. She’s down to 108 pounds from 125. She’s short of breath and weak from not eating barely anything. She is back in the ER now. She’s had to get IV fluids several times for dehydration and IV nausea meds. She’s so upset and feels like she just wants to die. I’m getting really worried. She hasn’t had enough nutrition for over a week. The first bout she had was in November for 3 weeks, took Prilosec for 6 weeks and it was gone for about a month and now it’s back going on 2 weeks again and worse than last time. I’m going to ask the Doctor about this. I’m so sorry you had to go through all of this misery and that you were doubted.
My 12 year old daughter has had extreme abdominal pain and nausea for a year. Her GI doctor also diagnosed her with IBS-Constipation after all of her tests: x-rays, HIDA-scan, 2 ultrasounds, colonoscopy, endoscopy. He said everything looked good, and he looked at my face which was so disappointed. He said this is good news. I told him no it wasn't. I said my little girl went from a normal happy singing child to a bedridden child within 1 year. He says he wants her to see a therapist. I told him that this is not in her head. She is missing a lot of school. Her doctor wants her homebound, but my daughter loves school and her friends. She fights and struggles to get dressed to just go to school. She can't even describe the pain on a pain scale anymore. We have been to the ER twice and when she is administered morphine, it does absolutely nothing for her pain. It just makes her sleepy. The ER doctor told me they really can't do anything for her. It feels like a hopeless situation. She has an appointment the first week of this new year and I am going to tell her GI that I suspect MALS and pray he will look into it. Thank you for your video. It gives me a glimmer of hope.
LAURA BIRDWELL Did you find out what the diagnosis is? My 19 year old is going through hell right now, trying to figure out what’s going on. She’s so miserable right now and I feel so hopeless.
Hey girl, Thank you so much for this video!
I have MALS and pots too.
I have Ehlers Danlos syndrome ( EDS).
EDS can cause both and a million other things.
Maybe you’d want to rule out EDS.
Hopefully you don’t have it but just in case, it’s good to know.
Take care 💖💜💝
Yeah everybody wanted to tell me it either they didn’t know, it was constipation, or in my head… definitely questioned my sanity a lot on top of everything else
What doctor was able to diagnose you with this ? I am having trouble with what to do.
Who was the doctor who diagnosed me and who did your surgery?
Oh my Gosh. I am always constantly in a fetal position. I am having this same issue. It started in November 2017 and I ended up with a IBS diagnosis but I am not better.
Same holy shit, but how did they diagnose you? And also did you have twitching ???? My whole body is twitching
How was it diagnosed? A ct? Btw Thanku so much for creating this video. I def get your release after getting answers
Thank you for the video i just found out in January of this year that I have celiac artery compression syndrome and the pain started between 2013-2015 when i was in highschool i was constipated for a long time and they automatically assumed that I had chromed disease. Which I didn't then they also thought it was me taking ibprophen which it wasn't. And then my pain stop 2020 came in January and I past out from so much pain in my stomach at Starbucks when the ambulance had to pick me up and I found out from a specialist that I had celiac artery compression syndrome. I totally understand how you feel
celiac artery compression is the exact same thing as MALS. www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001
on the overview part it says other names for MALS. so you definitely do understand how she feels.
@@mattiesawyers4043 thank you thats way easier to remember then coac acetylcholine compression syndrome
Thank you for your video! I'm pretty sure this is what I have but not been tested for it. One question I have though is did heat help you with your stomach pain? Cause with mine I'm either in a very very hot bath or laying on top of a heating pad,I mean to the point where I have burned my stomach. I have permanent burn marks I needed THAT hot to help..did you have to go through that? I'm reaching out cause I am lost. No dr can find out what it is..
My dr says I look good on paper but he knows I’m sick. Finally a test showed that I have adrenal insufficiency and I’m on meds for that but I’m getting worse I’m almost home bound and I’m in bed most of the day.
I diagnosed w POTS in October and lost 60 lbs in 6 months. I cant gain weight and having malnourishment. Eating hurts and Im not hungry. So many doctors say its in our head.. Excerise hurts! Why I want to cry when nurses tell us have your tried physical therapy? I am wondering if I have MALS? It hurts worse when I breathe, swallow and when I sit up.
I'm having GI issues as well (pretty positive I don't have MALS) and my mom's favorite thing to say is that it's constipation too! Ugh!
and damnnn girl you went through hell! I'm so happy your surgery was so successful and you're doing much better
6:28 I feel you..that's basically me. 7:30 wow and here too
My celiac artery stenosis was found on a Abd CT scan with dye. I have a moderate amt of stenosis. Haven’t learned yet if I have the ligament stricture part. I have had years of problems with high BP ,with improvement after I had a left adrenalectomy tumor with gallbladder out at the same time years ago. It would be helpful if you would be very specific on what your ‘pain’ is like . Just saying you have pain does not do it. Did you have epigastric burning up into your ears, did you have a pinching pain when you would turn on your side, were you able to drink a lot of water, or just sips , would you feel cardiac heart palpitations as ready to faint if you sat or leaned over in a position that put pressure on your diaphragm.could you lean over and reach your toes with or without feeling short of breath. We need more specific symtoms. Pain does not do it for this problem.
Hello, I think I have what you do. Can you tell me who and where that doctor is that diagnosed you?
I’m currently waiting to see a GI doctor because I got an ultrasound done for my heart and when the doctor went down towards my stomach he saw a pinched nerve or something which makes him believe I could I have MALS. It’s frustrating because I went in for one thing and came out with a different theory. But it is somewhat making sense. Last year I had such bad stomach pain I went to the ER with stomach pain like never before (literally crying) and said oh you’re just constipated and gave me laxatives and morphine (didn’t really take away the pain).It’s a year later and I still sometimes get that pain even after I use the restroom. Now I’m hoping it turns out to just be I have constipation issues. I guess we will find out soon.
same i alway get told that it’s so annoying even tho we know the problem
Anyone ever have the MALS laparoscopic surgery? What was your experience did it help?
My diagnosis was given a year later after I asked for a CT of my abdomen. I noticed in my test results from a year ago they recommended a second ultra sound but my doctor did't do it.
Finally I said listen I know something is wrong, I've met my out of pocket for the year please run all the tests that will help. The gastric emptying scan fine, but the Abdomen CT found the MALS. I've heard they often just recommend to deal with it instead of having the surgery. I read somewhere the surgery for MALS has like a 60 -70% success rate? Did it work? I also just got married and don't want to try to get pregnant with all this but I am 35.
Mine is scheduled for next week, don't avoid it do it. I had eggs for a straight week and all my symptoms went away. It was a night and day difference so I couldn't live without it
This is what we are going through with my daughter. Diagnosed with hEDS, pots, sibo. Now having mcas issues. But I suspect mals too. But even with the diagnosis, all we get is 'it's all in her head' irs anxiety, do meditation
I just got an ultrasound and told I have MALS. Need CT scan though to confirm maybe. However I have no nausea after eating. My symptoms are different than many others, so not sure.
I was diagnosed from a CT scan. I have no nausea either. I only have pain when I'm completely full so I never eat until I'm satisfied. And I get the dizziness and being off balanced.
My doctor ordered me a ultrasound to diagnose MALS but I thought it was diagnosed through ct scan :/ I hope she didn’t order the wrong test
Hey cute and brave lady, I am from Germany (male, 29 years) and the symptoms are sooo similar to my situation!! Sorry for my bad english, but did you had this problems too even after just drinking a glass of water? In my situation just drinking a glass of water leads to big nausea and pain. Because of a Gastroparesis the water stays in the stomach for a long time.. Really scary. In 2 weeks I get an ultrasonic examination, so I will know soon, if it is the MALS thing or not :/
hey, i was just diagnosed with both MALS and SMAS, another compression affecting my stomach and intestines. i meet with a doctor next week to decide on the next steps so i really don’t know much yet. but i just wanted to say drinking a glass of water often hurts for me! like sharp pains all over my abdomen and it makes me nauseous too. so it might be a MALS thing? i have other conditions too so i’m not completely sure. did the ultrasound end up showing anything?
Im currently having all of the MALS symptoms but havent gotten a diagnosis. Ive lost a ton of weight. I had my 3rd baby a year ago and since having her i just cant stop losing weight without even trying. Its super painful to eat or deink ANYTHING. Including water! I cant handle this anymore. Im withering away and i hate it! I weighed 130 when i gave birth to my youngest. I was kinda chunky to. But now you can see my hip bones and none of my clothes fit. I dont know how much more i can handle. But my drs cant find anything. I have an appt tomorrow but its kver the phone since the corona virus is going on and now i probably wont be tested for mals since the virus is spreading. 😭 im sick of being in pain.
it definitely sounds like mals, stay strong
@@cheesebubbles5565 im trying. My dr said he can get me tested for it once everything opens back up.
ik the struggle i lucky got diamond within a month of have symptom but not my doctor even know about it so the don’t look for it just push through the pain
Could you please let me know who your surgeon was? I've been kinda diagnosed for MALS but my doctor is not sure if that's the main reason for my pain....and I live in LA!
His name is Anton Bilchik and he’s amazing! Praying for you!
THANK YOU SO MUCH!!
Same ! I’m also in LA and my doctor told me “no doctor in California will want to touch it, the success rate isn’t the best”
Have you had a fast heart rate or hear your heart beat from your chest? I have MALS I believe. “Anxiety” they say. I don’t believe it. Ive have passing out episodes since 2016.
Sounds like you might have POTS. I believe pots can be hand in hand with MALS
Hey I've been diagnosed with MALS. Is there anyway I could get in contact with you?
R u symtom free now
I hope you yelled at those other jerk doctors!! So glad you're better!! I'm in the middle of getting into MALS.
I read a study saying this is more common in northern Europeans as well as some French
So French , Irish , English , Scottish , Amy Viking ancensty this is more common
Are you any of those things?
Not that this can't happen to Asians or African-Americans
But I'm noticing a lot of really weird variations in arteries and vasculitides of women of this ancestry and they don't present with problems until 20s or later
I mean postural orthostatic hypotension can cause all types of weird things with digestive organs so you know it's back to the chicken or egg what caused what
Because compression in those places can cause blood pressure issues, vice versa
Where did you go for your surgery? Who do I call? I’ve lost about 60lbs. Please help me. I’ve been having all of these. I’m gonna die if nobody helps me. I just want to gain weight. And feel better.
Please respond your literally my only hope of getting answers.
Please. I’m begging you. I cannot live like this. I need someone to diagnose me. I’m almost 100% positive I have this.
@@SkeppGlocc My partner has this but unable to get the surgery. He has had success with eating smaller meals more frequently throughout the day, standing up after meals, and stopping eating 6.5 hours before bedtime. No laying down during the day. At his most severe, he had to eat a tablespoon of food every 15 minutes (nothing acidic, so no meat, tomatoes, black pepper, coffee, etc, he used rice + beans + olive oil, potatoes, anything soft that breaks down quickly) to get enough food down during the day so he could stop losing weight. Once he was able to get his stomach better (no more pain from ulcers) he started expanding his diet (now vegan) and was able to eat more regular meals. He had to very slowly scale up the size of his meals and still doesn't eat until he is full; overeating at any point can set him back weeks of progress. He also found that taking Allegra (at the normal dose) was helpful. I hope this helps you.
Hayley Brooks I have MALS and POTS causing me to have all these problems.
Hayley Brooks sounds like you might have it too. Or whoever has that problem. I found my answers tho. But thanks.
😓😓😓😓
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Hi I’m 16 and I have been waking up nausea and vomiting every morning for the past 3 months only in the morning to like 12 and I lost a lot of weight to where everyone can notice in school ,I also have abdominal pain in the top middle of my stomach and all my test came back clean they then diagnosed me with functional vomiting just until we can figure out what’s going on if anyone has anything that might help please comment
I'm concerned about your pots. If you have one compression, you're more likely to have more. My daughters pots is from the compressions across lower abdomen. Blood is going down to legs, but only 40 percent is going back to her heart, and less to her brain, causing the pots. Her renal vein is compressed causing blood to back flow to spine, to brain, causing the constant pressure migraine. She didn't have classic mals, but does have may thurner, nutcracker, among others. He had her eat, then scanned her duodenum. It's not emptying, so that's causing her feeling full, pain and nausea. I'm suspecting nuero mals. He doesn't check for that
Plese explain in hindi
आपको ये प्रॉब्लम है क्या
Mujhe mals he
PAF.ORG for anyone having insurance issues
I haven’t gotten an official diagnosis but my doctor said that my ligament is on my one of my arteries, and this is the only thing I can find.
I pray everything goes well I’m only 24 years old.