I waited 38 years for a diagnosis

It has been a year since I last wrote a blog and so many things have changed. I am diagnosed with a definitive diagnosis of MALS which means Median arcuate ligament syndrome which is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).


I have had this my entire life which explains why I was in pain most of my life. The worst part of this is its seen on imaging and I have had hundreds of images done. Not one doctor bothered to look at the arteries or the nerves. Not one doctor even brought up the diagnosis of MALS over 38 years of pain and misery. Grey's Anatomy and House have both done shows on MALS and how rare of a diagnosis it is so that gives me a little relief knowing that most doctors are not even aware that MALS exists which is why I share my story. More people need to know about this horrendous illness.


MALS starts to affect most people in their early teen years. It is often seen with severe weight loss or thin individuals who find that eating food makes the pain worse so people stop eating. I dealt with this as a teenager. Food hurt. I lived on cereal and soft foods mostly. I told my parents, a lot, that I felt like I had the flu all the time. I was in pain constantly. I thought nausea and vomiting was a normal part of my life because I battled endometriosis and severe period pain and complications from the day I had my period. I could barely function in the morning and was often late to high school. My senior year was the worst of the nausea and the pain and I had to have my schedule changed so I could come in late to school. I was unable to make it there on time and it really hurt my grades so the best option was to change my schedule. I also dealt with severe bullying in high school from the girls volleyball team and between being sick everyday and the mean girls my high school life was hell. I still graduated with a decent gpa, a full scholarship to any Arizona college I wanted to attend and a good sense of who I was. I did not let the distractions get in the way, I made new friends who were real and genuine and supported me.


This illness has taken a lot from me but when I look back on how my teenage years were there are so many great memories that outweigh the bad ones. Despite having MALS and SOD, a connective tissue disorder as well as a neurological disorder I graduated high school, I went to college and I had a tremendous career owning numerous businesses, working with super star athletes and raising over $5,000,000 for charities through MY own efforts and hard work. I took those painful lessons and hurtful moments and turned them into a life. I lived that great life until about 2016. When I had to have my gallbladder removed.


In 2016 the pain became so severe that I thought I was dying. I could not tolerate food nor liquid and I found myself losing more and more weight. I was enjoying the weight loss but at the expense of my health. My hair fell out. I could not stay awake. I was working full time during this and found myself vomiting four to six times a day in the work bathroom. I thought I was getting food poisoning from food allergies. I knew that food was making me sick but I could not get any doctor to acknowledge what I was telling them. I said it felt like I was dying when I ate food. It felt like I had pancreatitis everyday. I did develop chronic pancreatitis for a while from Sphincter of Oddi dysfunction so I never knew if my pain was the pancreas, the liver or just MALS. I spent two years living in hospitals, starving, having to quit working, getting fired over and over again for being sick while working or having a mental breakdown and walking out. I never knew what was making me so ill. It was not until the end of 2018 that a friend of mine suggested MALS. That is when we began to do my celiac plexus blocks which confirmed a diagnosis of MALS. I then had to wait until 2020 to confirm the diagnosis with an ultrasound by a Vascular Surgeon.


Simple as that paragraph that I just wrote. I thought I was dying and MALS was the answer. Celiac plexus blocks were the treatment and home dialudid helps with the joints and bone pain and SOD pain as well as the left over pain from eating since I can still feel pain just not as severe. I am no longer home bound and can work a few days a week for a short amount of time per day. This gives me the freedom to have cash to enjoy being able to buy myself lunch or yoga pants. Or purses.. which I will write a blog about that soon!!! I also help my fiance out as much as I can but he is pretty good to me that he allows me to keep what I make and use it for paddle boarding or supplements or just to buy food. When blocks are working I eat! I have gained weight back that I lost and some extra pounds. Unfortunately. Now I have been working on getting my diet under control but I have developed a form of anorexia where I do not eat and am not hungry so I have to force feed myself. Most of the time I do not eat on a strict diet anymore as I need to just get food in my body. One day it could be a salad and the next day its just bread. I am losing weight again from my diet being limited but I am getting in nutrients through supplements. I am loving Juiceplus and their vegetable and fruit capsules. It does hurt to digest them but I suck it up because I need the nutrients so my hair does not fall out, my joints need to stay healthy and the energy is great for me. I highly recommend them. I also use protein shakes for nutrients on days like today where I have not eaten at all. Im able to sip water but I have no appetite not even one for bad food. I will have to force feedmyself today. I have smoked marijuana all day and not even that is making me hungry. I just feel great. I did eat a lot last night after I came home from work as I worked a six hour shift and walked over 12,000 steps and did cardio and weights. I was starving yesterday and now today nothing. So supplements, juicing, acai bowls and juicepluse capsules keep me healthy.


I am awaiting MALS surgery. The surgery is brutal and takes six months to a year for recovery. I have been optimistic I could avoid surgery but the ligament compressing the celiac artery is causing the neurological symptoms and heart problems so I need to get the blood flow corrected. That involves the surgeon cutting my abdominal region open starting from the diaphragm and going in and cutting out the ligament that is strangling the artery. Then, because I also have neurogenic mals which causes my celiac plexus region nerves to be bad, they will cut out the entire celiac plexus region in my body. This will cut off all feeling to my gastrointestinal system but give me the relief I so badly need. The surgeon will also address any other issues there might be such as scar tissue causing problems from my eight previous surgeries. The surgery should allow me to be semi pain free and learn how to eat food again in a healthy way. I just hope my suppressed appetite does not continue. I can stand to lose quite a bit of weight right now but it gets scary when you see if come off too fast and for the wrong reasons.


I feel a weight of relief off of my shoulders sharing this short part of my MALS diagnosis and story of how I got there. I will be getting into more details in my blogs about life experiences that changed who I am. Also, there are some real fun stories I want to share about working in the sports industry. Working for Anquan Boldin was the best times of my life. The Boldins gave me so many opportunities in life and allowed for me to be at home when I was at my sickest at some points. Their two events a year allowed me to not have to work full time. I also was very fortunate to have received government help and with that I bought myself five years of life at home. This was divine intervention because I was my sickest from pre hysterectomy and ovaries removed. I have so many great stories to share to show that even though I had pain and misery and sickness I still was able to accomplish goals and life milestones. It may have been few and far between sometimes, but I still accomplished every goal I set for myself. There is one I have yet to accomplish but I know the day will come.


Thank you for reading my story. I hope it inspires you to do something good for yourself today. Appreciate your health and your ability to live a life pain free. If you are a fellow MALS, SOD friend I am thinking of you. I will be sharing a blog about celiac plexus blocks soon please read it. It could change your life.


Wishing you healthy and happiness.


Sarah




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It’s been four weeks between posts. I tried to write this blog over and over again but I just felt like I was letting all of you down. I am suffering and have been since surgery from nausea and vomiti