This year has been nothing short of madness, as I’m sure you can agree. Everything that’s happened in the past six months since my last update (check-up at Cleveland Clinic) has me feeling like I’ve been dropped into another life. There have been countless changes, so many new challenges to face, and seemingly endless craziness. But I know I am not alone!
When the pandemic hit, I left my apartment in New York City to quarantine with my family in Upstate NY before things got really bad in the city. I feel so fortunate that I was able to get out in time and ride it out at my parent’s house. I’ve been out here living the small town life ever since!
Although, I am finally returning to the city this week after four long months away! I can’t even believe I’ve been gone for four months! Now, my boyfriend and I and our roommate are moving apartments, so I need to return to help. It’ll definitely be a busy first few weeks there, but I’m so looking forward to moving into our new place and getting settled again.
However…in these four months that I’ve been at home, I’ve been dealing with some difficult new developments with my health. Hold on, cause this update is a doozy.
For the past year, I’ve deen experiencing episodic stomach pain. It can get so bad that it’s hard to eat anything. Sometimes, even drinking water intensifies the pain. To make matters worse, nothing seems to provide any relief. I’ve tried Tums, acid reflux medication, PPI’s, digestive enzymes, you name it. I even drank aloe vera juice because I was that desperate for something to work!
But nothing helped, and I still experienced bouts of this debilitating stomach pain. The weirdest part? It hurt every night and still hurts every night. The constant pain and worsening pain with eating only happens with what I call “episodes,” which have lasted anywhere from a few days to a few weeks. In my last episode–lasting all of May–I could hardly eat anything more than a liquid diet and lost about five pounds. Honestly, this was scary and miserable. I love food!!!
In October/November of 2019, I went to a GI doctor for a full workup. This included an endoscopy with biopsies. My stomach pain got way worse after this procedure, and I swear, I thought I had a hole in my stomach. I was about to call their office back and be like, what did you do?! However, the endoscopy showed nothing, my biopsies came back normal, and the doctor threw me a GERD diagnosis and some PPIs.
But like I said earlier, that didn’t work.
So around the time I left New York City in early March, my stomachaches were completely out of control. Every night, I woke up wanting to puke. I’d spend half of the night on the couch, tossing and turning in unrelenting pain and trying not to vomit. You can probably imagine how exhausted this made me. My POTS symptoms got worse. I felt very ill overall.
Once I got home with my parents, I knew I had to push my doctors to do further testing. Something just wasn’t right. I knew it in my gut. Heh.
After a breath H pylori test came back negative, as well as other tests for bacterial and parasitic infections, I contacted my Cleveland provider in neurology. Right away, he thought my stomach pain could be something else: Median Arcuate Ligament Syndrome, or MALS. He’d only ordered tests for this a couple of times, but he felt confident that this could be my answer.
So, I traveled with my dad and my boyfriend to Cleveland to get an ultrasound of the mesenteric arteries. The results showed no compression, however, my celiac artery was tortuous. When I got the call with these results, I immediately had a severe panic attack when I hung up. I had no idea what that meant, but it sounded so scary (and still does, quite honestly). For a while, I thought I was going to die because of it. Bottom line: I needed to consult with a vascular specialist ASAP to determine the severity.
After meeting with the vascular doctor, he didn’t believe that I had MALS. When I asked what could explain my kinked artery, he simply said that some people have different anatomies, but I shouldn’t worry about it. I wasn’t fully convinced because of my pain, but he insisted. He referred me to a GI doctor at Cleveland for the next step, believing my cause of pain to be GI-related.
After the vascular appointment, my dad, my boyfriend, and I were so relieved that my artery was okay that we went out to celebrate–social distancing style. We went to an outdoor Mexican place and got margaritas and did a cheers to the good news! I can’t even tell you how relieved and happy I was–and that wasn’t just the tequila talking!
Sadly, the celebration didn’t last long though.
The very next morning I got another call from the vascular doctor. After reviewing my case more overnight, he now wanted to run a CTA (CT Angiogram). He thought that maybe the artery tore at one point and healed in a twisted position. The scan would rule this out by looking at the quality of the blood vessel’s walls.
I agreed to the test (I wanted one to begin with) and scheduled it for the next day. I remember thinking, but I just celebrated being okay, and now I’m not anymore?!
It’s really hard to be in a position where you’re scared about your health and wellbeing, told you’re going to be okay, and then learn that that may not be true anymore. If you also suffer with your health, you know what I mean!
So, with a brave face and lots of steroids in my system, I got my CTA done. I’m happy to report that I had no allergic reaction to the contrast dye (thanks, steroids!).
A few days later, I got the call from my vascular doctor with my test results. Interestingly enough, while no compression showed up on the ultrasound, the CTA revealed 30% compression of the celiac artery. I was diagnosed with mild celiac artery compression syndrome (also known as MALS) and referred to pain management at Cleveland Clinic for further steps.
While I have an answer now as to why I’ve had episodic stomach pain, I’m kind of stuck at an impasse. I need to find a vascular surgeon who’s knowledgeable on MALS and has treated it more than just a handful of times. I’m not sure I can find that at Cleveland, as no one seems to want to step up and be the leader of my care. I just keep getting bounced from person to person, department to department.
So far, I have read good things about Dr. Hsu in Connecticut. I think I’ll be looking into how I can get a consultation with him and determine if I need surgery now, or if I should wait since the compression is only 30% right now and my pain isn’t constant.
Please, if you’re reading this and have experience with MALS, let me know who you’ve seen in the comments below! I would SO appreciate any advice!!!
Phew! That was a long health update, but that’s where I’m at in life and in my healing journey.
When I first learned about this diagnosis, honestly, I had a lot of emotions. I still do because I’m still processing. I think a lot about the future and what that will look like for me. I mourn for the life I had a year ago when I had finally learned of my POTS diagnosis, and I was finally getting some relief from my symptoms.
However, I know I am not alone, and that is a comfort. Know that you are not alone too. Remember that you are stronger than whatever battle you must face today and tomorrow. I remind myself of this every day now. I am strong and resilient and I will get through this, and I have faith that I will be better on the other side of it all.
I have a lot of learning and researching to do about MALS. That’s life with chronic illness: learning everything you can to help yourself and then trying it until you find something that works. It isn’t easy, and it’s not necessarily fun, but it’s essential to living well with chronic illness and cultivating a life you still love despite your conditions. It’s all about your attitude!
I’ll write another health update when more has happened, but for now, I’ll close this one. It’s time to get ready to go back to the city, and for right now, I’m focusing on how excited I am for that!
Sending love to you all and thanks for following my journey. A quick reminder again: If you or someone you know has MALS, please get in touch if you feel comfortable sharing your experience with me!
XO – Laurie
I’m so sorry you’ve been through this. It’s all so familiar to me. I don’t have MALS, but I do have POTS, although I wasn’t diagnosed with it until this year. I’m in my late 30s. I found your blog while looking for compression sock info on the web. The thing is, I’ve had POTS since my late teens. Like you, I was a competitive dancer in NY! And a runner! Everything stopped during college.
At that time I got sick with something else-multiple sclerosis. Docs missed that too until my mid-30s, even though tests at the time very clearly showed that I had it. Without treatment for either condition, my career plans were derailed. Thanks goodness I have good care for both chronic conditions now!
I am so glad that you have found out what is going on with you, and that you are pushing for answers and for good care. I am sure it is helping others who are coming across your story.
I totally relate to these ups and downs, to the uncertainty about the future, and to the feeling like an old lady already. This blog is so valuable. Thank you for it.
I’m just trying to figure out what my compression socks look will be, and I’m thinking “that weird lady who walks with a cane and wears shorts and knee-high socks that have bright colors and animal prints on them.” 😀
Thank you SO much for your comment! It’s not always easy to share such personal aspects of my life but knowing that people like you find it valuable makes it all so worth it. So thank you for reading!
It’s crazy all the similarities we have with dancing, running, and struggling through college! I am so sorry it took you so long to receive both of your diagnoses. However, I am glad to hear that you are getting good care now for both MS and POTS! You are an inspiration as well for not giving up on finding the care you deserve!
As far as compression socks go…I say rock ’em!!! I prefer all black ones, but choose whatever colors/patterns you love, as you’ll feel better about wearing them. Luckily, there are many designs out there now, so I’m sure you’ll find something that speaks to you. 🙂 Compression really helps me, and I so hope you find some relief with them too.
Wishing you nothing but the best on your healing journey! – Laurie
First of all B L E S S. My gosh I know EXACTLY how you feel. I have bounced around so many doctors its unbelievable. I even had a minor heart surgury last year where I was almost 100% guranteed I’d stop feeling so crappy and would stop blacking out. Long story short- I was only okay for about 6 months after the surgery. My best friend and her sister have POTS, and their mom is a physician. She told me about this great cardiologist in Dallas, TX ( I live in Fort Worth TX). It took me around 4.5 months to get in to see him because he’s THAT good- or so I was told. Well, I am here to tell you that he is. He has done extensive testing and has gone above and beyond. He diagnosed me with a couple of things (she said bitterly), and guess what?! One of them is MALS. Like you, I was flipping sh*t. I still kinda am honestly, but thus far he has helped me immensely!! I also have POTS so like I said, I can relate!! His name is Dr. Amer Suleman. He is FANTASTIC. My paranoid and inquisitive self, researched him profusely. I was tired of bouncing around doctors, getting cut open, having so many labs done, etc., that I decided I would do some investigating beforehand. Dr. Suleman is double board certified (huge deal in medicine), he did a double fellowship so he’s certified for internal medicine and cardiology. In addition, he has the highest certificate one can obtain in electrophysiology and sonography. I am telling you, he’s fantastic. I had lost hope for my health because it seemed like nobody knew what I had. I looked fine, but I was not. It was so frustrating and though nobody likes to be diagnosed with anything- I feel a sense of relief that Dr. Suleman has given me an answer to some of my issues. I hope you can find some relief in him too!
Hey Kari! Thank you so much for reading and for sharing a piece of your story with me! I really appreciate hearing that I am not alone in this. I’m so sorry to hear how much you’ve struggled too with your health and getting the help you need. However, I’m glad that you’ve found a doctor that has given you some answers and that you’ve had good luck with him thus far! I will keep Dr. Suleman in mind. Thanks again for sharing! I hope all goes well for you and that you get continued relief! 🙂
Hi Laurie,
My 20 yo daughter was diagnosed with POTS in Jan 2019 after being very sick for 18 months. She was first diagnosed with SMAS but that had improved with a slight weight gain but she continued to be very sick. She was always nauseated but frequently she would wake up from a sound sleep at night throwing up and afraid, wanting someone to sit with her. I finally put my foot down after 18 months and asked our GI Dr why she continuously would wake up from a sound sleep throwing up. I believe the GI doctors all thought she had anxiety. He said you know she may have POTS and referred us to a cardiologist who specializes in POTS. We had never heard of it.
The cardiologist that finally diagnosed my daughter with POTS immediately suspected she also had MALS. We had an ultra sound with a very experienced technician who was very familiar with MALS. She was able to tell us my daughter does have mild MALS. The vascular surgeon our cardiologist consulted with said my daughter’s case was not severe enough for her to have surgery so thus far there has been no treatment for her MALS (she also isn’t experiencing the pain You are having). Our cardiologist did tell us that the closest most experienced surgeon for MALS (for us in NC) is in Washington, DC but he never provided a name since we do not need treatment for that at this time. I will try to get more information for you though if you still haven’t found a doctor.
My daughter has gotten a little better and has finally been able to go to college but she is still waking up at night with her heart rate swinging anywhere from 100-170 beats. We now know that was what was happening all along and that is what makes her throw up and scares her. Since she has been at school it has become way more frequent (six times in 3 weeks) and we have already had to go to the ER twice to get fluids to get her out of the heart rate swings. I came across your blog trying to research what could cause her episodes while she is sleeping. This never happens to her during the day. I am beginning to suspect it has something to do with positional constriction of an artery while she is sleeping. I am now having her note what position she was laying in when she wakes up having an episode. Do you ever have this happen to you while sleeping? Is it common in POTS and MALS? I never see anyone blog about this but maybe I am missing it.
Hi Lisa!
Thank you for sharing your story with me, and I’m sorry your daughter has been having a tough time with these episodes. Like your daughter, my MALS is currently mild so I’m kind of waiting and watching at this point as I’ve actually been feeling better with it lately. But I’d love any doctor recommendations as it will be something I need to address in the future!
Also like your daughter, yes, my pain episodes happen mainly happen at night. It drives me crazy because I cannot figure out why!! I wonder the same thing you are, whether it has to do with positional changes while sleeping or deep breathing while sleeping. I’ve found sleeping on my stomach is terrible, but sleeping flat on my back helps. I don’t know how common it is with POTS and MALS, unfortunately. I need to research it more myself. Are you a part of any Facebook groups for POTS and MALS? They are good resources to ask specific questions to other patients and caregivers.
Some POTS patients can have adrenaline rushes at night. That could maybe be causing your daughter’s heart rate spikes while sleeping too. I heard this from Dr. Wilson at Cleveland Clinic. Also, when I was in college, the stress of school definitely made my symptoms worse. I never measured my heart rate, but I’d wake up now and then at night with my heart pounding. It was distressing when it happened, so I can empathize with your daughter.
Have her keep a journal of what nights she has pain, along with anything she can think of that may have contributed to it (sleeping position, food eaten before bed or overeating, school assignments or exams, exercise (too much core exercises I found to be a pain trigger), any caffeine, etc.). This really helped me figure out triggers so I can avoid them, and I am doing much better. I am wishing you and your daughter all the best, and I hope she can find some relief soon!
I cannot believe the doctors did not put your daughter on beta blockers to reduce the tachycardia-it’s always the first thing they give new POTS patients. They help a lot of patients but they made my daughter even more tired, bc they reduce blood pressure-and hers was already low. So she now takes Corlanor-a very expensive med that reduces tachycardia but is NOT a beta blocker. As for sleep, our daughter benefitted very much from getting an adjustable bed, helped with blood flow and also made the transition in the morning easier. In the dorm, however, we could not move her adjustable bed in there, so she uses 2 triangular heartburn pillows to prop her head up. Since she has connective tissue disorder, painful joints, an adjustable bed takes a lot of strain off the body-these heartburn pillows help a good deal as well.
Thank goodness that doctor wasn’t too proud to call you back and admit that he might have misjudged your case.
Could the MALS have caused your POTS? I mean, when you had a back problem and your overall health declined, could that have exposed the weakness that you had with MALS that had been masked by your being young and healthy?
I am still on my diagnosis journey. I have terrible fatigue on a diurnal pattern (starts every morning, goes away in the evening, then starts all over again). I call it Jekyll & Hyde symdrome because I am two different people. I have some signs of dysatautonomia, such as heat intolerance and orthostatic intolerance, so I’m being investigated for “POTS without the T” (I don’t have tachycardia).
I found your blog because of your post on how to start a chronic illness blog because I am thinking of setting one up myself. Thank you for the helpful advice there and best wishes on getting your health sorted out.