วีดีโอ

I am curious about this test, as I have POTS like symptoms. My problem is that its hard to test me because of my anxiety. When I am home, my resting pulse rate is 65 and my blood pressure is near 120/80. You break out the blood pressure cuff in a doctor or hospital setting and my pulse will be 100 and blood pressure 160/90

I have been to so many doctors over the past 4 years. I've had hundreds of test . So many GI specialist I've gotten passed around from specialist to specialist and no one has any answers for me for why I can't eat no more than 3 bites of food and I have to stop eating and spit out what I'm chewing because immediately I will feel such severe pain. I can't go out to dinner with my husband cause as soon as the food gets served I'm already feeling like I need to go to the ER the pain is excruciating. My husband had to pack the food up because I started having pain after 1 stupid roll. So no more church potlucks,no birthday parties because I can't eat. 1 doctor gave me that dopplar ultrasound and it showed 70% ischemic blockage in Superior Mesenteric Artery so I was referred to vascular surgeon. She came in joking with her nurse and she asked me who I was, she had the wrong chart she called me by another patients name. Once she had the right chart she said nope I can't have it because I am not old, I have to be an old lady just be greatful that it's not what I have. I asked her how can she be so sure and she said th CT scan doesn't back up the dopplar results. I had the dopplar taken again and it was inconclusive because of too much gas it was unable to see the arteries. Vascular surgeon #2 read my chart as soon as he took one look at me he's shaking his head no. I asked him why dopplar says one thing and CT is different. He said it probably the person fault he could have done it wrong so I begged him to do an angiogram what would be the harm to go inside and look around I'm desperate. Vascular surgeon said he doesn't want to because he doesn't think I have it. He said he can order another CT scan with contrast but he's confident it's not what I have. I wasn't about to pay $685 for a test that's not going to show anything wrong. I think maybe if it's not SMAS then maybe MALS but I can't get anyone to help me. The doctors walk in take one, look at me, shake their head and walk out they don't spend more than ten minutes with me before I'm dismissed crying because no one will listen to me. I can't take this horrific pain as soon as I eat a few bites of food my stomach will begin to sound very loud and then it will feel like I have a heart beat directly in the center of my stomach you can actually see the pulse racing it's so strong that it travels up to the Artery in my neck and then the pain starts. I'm on the strongest of pain killers and they don't even help anymore with the pain. I don't know what else to do to get the help I need. Doctors aren't taking me seriously and look at me like I'm crazy. I tell them why would I make this up I don't like my kids my husband seeing me laying on my side with my knees to my chest crying out to God to heal me or please help the pain subside a little bit, or to not allow the pain not to last as long. I hate being a burden to my loved ones,hate going to emergency room visits, going from one doctor to another. Im so tired of this pain sometimes it's so debilitating it is hard to stand up straight for a while after having one my episodes. What I don't understand is why the doctors keep telling me to fast and then do the test.They need to feed me and watch what happens to me after I eat. Makes absolutely no sense at all to tell me to fast. They need to give me a sandwich and then see what's going on inside me as I eat my food do their test while I eat. I have let doctor do surgeries on me just to see if that would help. They did a revision of my Bariatric surgery, they cleaned out my bile duct it didn't help, and they did ERCP and remove some of my intestines, they've done biopsies of my stomach and no of their experimental surgeries have helped with this pain. I'm now severely depressed and don't want to go through this suffering anymore. I wish I could get 1 doctor just one that would treat me as if I was someone 😪he loved that's going through this Hell that is my life. If the doctors themselves were going through this I bet they would do anything to find out what's wrong they wouldn't be satisfied until they had a diagnosis because the pain is that intense. It has gotten worse over time and I actually feel like I'm going to die from the pain. Sorry for going on and on I'm hoping someone will read this and maybe point me to a doctor here in Texas or maybe someone will read this and offer some advice and prayer🙏🙏🙏Thank you God bless you I am sorry that you have MALS I pray you are doing well now.

Thank you so much for the understanding of this test, I am going to the cardiologist tomorrow and I’m super nervous cause my appointment is not just this but so many other things this really helped me calm down before hand to understand what I will be experiencing

Stupid doctors... And they get paid for being stupid...

I am currently experiencing these symptoms and i do not know what doctors to go to anymore ........ at the ER they told me i am fine and that everything is psychosomatic

I’m going for a test tomorrow. I watched this ad part of my prep, handy really cause it reminded me to wear something that gives them easy access for the monitor pads. I’m not too worried about passing out because even before I had long Covid I’ve often passed out from Needles so I’m kind of used to dealing with it though to be fair. I usually deal with it by getting this horizontal as possible as soon as possible. So that part will be a bit weird being upright whilst I go. Hopefully they won’t need to put an IV in me because that alone could knock me out and leave me needing most of the allocated test time just to recover the baseline I’ve not left the house in three months so a 40 minute car journey there and having to not lie down whilst I’m waiting for my appointment or all going to be pushing me over anyway so my biggest concern is that the difference between the baseline I can then achieve my reaction to the test will suggest that I’m not reacting as badly as reacting because I’ll be in an ongoing I have had advice from elsewhere to make sure to not wear type leggings or compression tights or anything like that because that can give you too much support and symptoms - I’m seriously considering going in my pyjamas just so I can be comfortable and minimise the amount to exertion that goes on before I get there😂

Hallo ma'am.i am from India. My sister suffer this condition Celia artery compration syndrome. Her age is 23. 2 year are passing in this condition. Firstly doing meditation.but no relief then leproscopy surgery perform.but no proper relief. Only one sign in patient is pain during eating aur drinking anything. One thing special is more pain when she eat any sweat diet of food . Please ma'am suggest to me.what I am next do....

I just had a ct scan and they found MALS and I'm freaking out and need some one that's gone though it to talk to please help

I agree! MALS has many random symptoms… Yes..pain under ribs etc! So refreshing to hear other testimonies! My surgery was 4 hours! 9” incision

I feel you about the whole not being believed thing, it sucks when healthcare professionals either just won't listen or they tell you you're fine when you're trying to explain. I had a HIDA scan last November, a month + few days after my pain started, and it came back functioning at 90 percent (considered to be a hyperactive gallbladder) but they didn't discuss my results with us so we went all this time thinking my gallbladder was good to go, but yesterday I went to my pre-op consultation appointment and I told my surgeon that my doctor said my gallbladder is hyperactive and he told me it's confusing because my pain is in the lower right abdomen instead of the upper right, but he also said that while he's in there with the scopes he'll make another incision to look for endometrial tissue and endometriosis scar tissue as well just to be clear on that too, and I genuinely trust him with safely operating on me whilst I'm under anesthesia, so I hope that my surgery goes well. I get my surgery in two weeks and we are hoping that my problems will be solved!

Thanks

Pots has increased since the xa- v (spelt backwards)

I've had colonoscopies, endoscopies, ct scans, told I'm a morphine junkie which gives me a headache. I don't know what food is going to trigger my pain, vomiting or diarrhea. Im afraid to eat right now. My gastroenterologist i know he thinks im crazy or a hypochondriac.

I’m going in two days now I’m scared

I also think the fact that I’m black and now pale has hindered my diagnosis

I told them I had this!!!!! I just got diagnosed today 😢😢😢😢 this episode helped so much

I had mine this morning. Wouldn’t wish it on my worst enemy. Horrible experience. Uncomfortable and extremely unpleasant. Didn’t feel faint at all. Had to stop test after 20 mins in upright position because discomfort was too much. You can hardly move and the restraints make breathing and movement difficult. All these tests I’ve had to have because I fainted for 3 seconds 15 months ago. A one off occurrence and doctors overreacting 😡

TMJ, Lupus, SVT, Back disc surgery, Neck Surgery, Cervical Spinal Stenosis, Knee Replacement, Just diagnosed with May-Thurner Syndrome post op knee surgery April 8th, 2024 I am a retired K teacher. 66 years old. Started getting sick in 2010.

What does POTS mean?

I understand the frustration. Showing up at ER with this pain and explaining where the pain is and etc etc, do blood tests and for liver and came back fine. So annoying when I’m feeling this way inside. Anyways I have an ultrasound booked. I was suggested to see a physiotherapist too, as my rhomboid might be pulling on my front right chest area. It’s like drs do everything in their power to not help you past the basics of a blood test and pain meds

this is really random but my brother was iust diagnosed- who performed your surgery?

I have ncs I have venogram scheduled thanks for being informative

I was gaslit by doctors for 3 years and they told me it was all in my head. I finally demanded a hida scan and it revealed my gallbladder was dysfunctional operating at around 7%. Ultra sound showed it was inflamed. No gallstones. Only then did they believe me. I tried everything to manage it and stop the attacks but to limited results. I can reduce the symptoms but not stop the attacks. I've been pushed to my last resort and that was to remove it. My surgery is tomorrow. I'm nervous but I just want it out. I hope I don't have any issues after it's gone.

They said I don’t have Mals, what else could it be- does any drug or thc gummies give pain relief and relax the ligaments

lol "that wraps up"..

Thank you for sharing this your information has brought some peace to my mind.

My Bariatric surgeon here in Los Angeles does a minimally invasive robotically assisted MALS procedure. Lap surgery may not be the only option anymore.

Another voice to the list. It took me a year and a half to get diagnosed. I had an injury that caused a lot of damage to my abdominal wall and MALS. I was also told for a year that it was panic, anxiety, psychosomatic, random normal GI issues. I had one doctor tell me I was playing a victim, I've never done anything with my life, and I should see a psychiatrist. I was also ready to end my life. I called the suicide hotline 15 times between December 2021 and December 2022. I was in so much pain I would howl on the floor of my bedroom like a dying animal. I started doing breathing exercises to strengthen my diaphragm, and they helped...but only because I wasn't getting treated, and it still took a long time and hurt badly. Eventually I had a CT angiography and a Vascular ultrasound that showed an 85% and 90% stenosis around my celiac artery, that was a year later. I feel all your pain, and hope for recovery for all of you.

Did you get nausea before the surgery and how about early satiety (fullness feeling after a few bites) I have nausea now I backed out of my first surgery right in the operating room I was consumed with fear of dying while under anesthesia any advice please. I’m so glad I found your video it gives me great hope knowing I might make it out alive

Should salt or salt water be stopped a certain time before the test day?

My granddaughter in her twenties is about to have her gallbladder removed. I'm worried about it and wish it didn't have to happen. Videos like this help me be optimistic and sensible.

nice to meet you. I am Japanese. Whether after eating or not, I felt nausea, heartburn, and a dull ache, and I couldn't sleep well. At times I felt nauseous and anemic and had to squat or lie down. I don't know if it's related, but I fainted once due to abdominal pain. Burning sensation under left rib. I had occasional pain under my left breast. Even though I was breathing, it felt like I was starved of oxygen. I was recently diagnosed with MALS. I heard that during exhalation, there is almost no blood flow and the blood vessels are almost occluded. I'm scheduled for surgery next time. Various tests were performed at the first hospital, but no abnormalities were found. Like you, I was disappointed at the hospital because I was told it was a mental illness. The symptoms were very similar to those of pancreatic cancer, so at the second hospital I went to the pancreatic outpatient clinic and had a contrast-enhanced CT scan, which luckily discovered MALS. It seems that only a doctor who knows about this disease can understand. It seems that many people go undiagnosed, and 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 as soon as possible.

My MALS is always presents in my lower stomach. Always. Never under the diaphragm. I’m getting robotic MALS surgery this Thursday. So yes it absolutely presents in different areas of the stomach.

Thanks for sharing your experience. I am waiting for the HIDA scan to be scheduled. I had a difficult time the last couple of years. I hope it won't be long to get there. I am really happy for your recovery. Be safe.

Ny first reaction was how and why she is standing and making video

Omar 6%

I’m almost 16 years old. I was rushed to the ER and had my gallbladder taken out a few months ago and while I was in the hospital waiting for surgery, they ran a scan and discovered proof of MALS. A month and a half after the gallbladder removal, the pain under right where the wire from the two cups of my bra met wasn’t away. Mid-upper stomach. In fact it was more severe especially after I ate. We pursued the path of treatment for MALS which means a whole bunch of tests and scans before a “proper diagnosis” is given. We met with the specialist and she still required more tests and I’m being tested for POTS in a few days. The specialist gave us a list of tests to complete and it’s frustrating that more information is still needed before someone can help me. I’m freaking out quite honestly. This video is 4 years old yet I’m so thankful for it existing because everyone I’ve talked to about it think it’s just a normal stomachache. It’s not. And I know there are people in this comments section and out there in this world that understand that. I’m overwhelmed, but all the same I feel blessed because I know there are cases out there where people suffer for months or even years before they get a proper diagnosis. Thank you for giving me hope and a place to share!

Why do i have to lay flat for four hours

I’m in the middle of being tested for MALS- I literally cried watching this video…I’d never seen this episode of G.A. They hit the mail on the head 100%!

I'm 45 years old, and have delt with the symptoms pretty much my entire life. I had my ultrasound last week, and they have rushed my CT angiogram in for today. I hope this gives me relief in any way.

Girl, not my life is easier like that. Cried alot during your video bcos i am struggling awfully for the mere diagnose for last 1 year but still left me fainted.

I had this in my 20's. I would be at work and bend down and as soon as I would stand back up it hit my heart wpukd race out of my chest, dizzy, had not energy and felt like I was going to faint some my heart would beat fast for like 30 min and sometimes like a hour. It was horrible I Thought I was going to die. It would always be when I would get up really fast. This was in the 2000's. I would never faint but always felt like I was going too. They never diagnosed me with this.

My exact symptoms. Dont know where to go from here because my doctors wont believe me im sure. Doctors are the most arrogant pricks.

Hey i dont know if you will reply or not, can you tell me the diet changes you made after the surgery and how long to stick to that diet

My daughter’s apprndix ruptured and the hospital sent us home saying it was the flu. We went back to the hospital the next day and they sent us home. We went to primary care doctor she sent us to GI doctor he had us do blood tests. I really thought it was her appendix. The cat scan they did said can not rule out appendix. I decided I was going to take her to every hospital until they would take out her appendix. Luckily the first one said it looked a little inflamed and would take it out the next morning. She was in surgery for hours. During surgery, the GI doctor called to say get to the hospital because one on the blood tests showed it was a ruptured appendix. Sure enough the surgeon comes out saying her appendix had probably been ruptured a week and it was a mess to clean up. She had to stay in the hospital a week. 5 years later she has immune deficiency- a ton of allergies- issues with her heart. I really feel that is all related to lack of care from all these doctors.

I’ve had stomach pain for 18yrs (I’m 37) I’ve been to multiple Doctors and GI Doctors, CT scans with contrast, ultrasounds, colonoscopy, endoscopy (2), and they can’t find anything wrong. My pain is different, if I don’t eat my left side kills me. If I’m too active, it kills me. I have to eat every 2-3hrs (full meals) If I’m really active and stay out all day. I can’t lose weight because of this. I can’t eat a banana and yogurt for breakfast and be fine till lunch. I literally gag trying to consume the food I need in order for my stomach not to hurt. SMH I’m so miserable

Left Shoulder

Didn’t the makeup work become overwhelming?

Firstly thank you so much for explaining. I have my Tilt Test next week and I'm so excited about it; I have ME and suspected POTS and I love that this is measurable and proveable.

Hello, I diagnosed the same disease in China, is there a patient group? Or do you have someone who is well treated in Thailand or Canada? Thank you