MY MALS SYMPTOMS (Median Arcuate Ligament Syndrome) from infancy to now
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- Опубликовано: 4 сен 2024
- This was a very vulnerable video for me to make but I wanted to share with you my symptoms of MALS in the hope that my experience helps someone else. MALS is so rare and hard to diagnose and often unheard of by many medical practitioners. Here are some of my symptoms as they presented from infancy through childhood, to hitting my worst and becoming tube fed, to now as they are improving. I hope you find this helpful. Also please note, nothing on my channel is ever medical advice, always talk to your medical team, take everything I say with a grain of salt and also know that many of these symptoms can cross over with other conditions.
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Here are links to my series of hospital vlogs sharing my experience getting my surgical feeding tube
Part 1:
• GETTING A SURGICAL FEE...
Part 2:
• FEEDING TUBE SURGERY V...
Part 3:
• FEEDING TUBE SURGERY V...
Part 4:
• FEEDING TUBE SURGERY V...
Part 5:
• Feeding Tube Surgery V...
Recovering:
Week1:
• Feeding Tube Surgery V...
Week2:
• A Week in the Life Rec...
Week 3:
• Days in the Life Recov...
Week 4:
• 4th Week Recovering Po...
Week 5 (infection):
• Serious Feeding Tube I...
Week 6 (Admission):
• Admitted for Serious F...
Week 8 (Follow up after admission):
• What's Causing my Feed...
Feeding Tube Playlist:
• Feeding Tube Videos
Hospital Vlog Playlist:
• Hospital Vlogs
My surgical feeding tube experience playlist:
• Surgical Feeding Tube ...
Why I got a feeding tube:
• So, I'm Getting a Surg...
My Naso Feeding Tube Placement (Surgical Placement):
• Hospital Vlog: Getting...
My Naso Feeding Tube replacement (NG Tube non-surgical):
• Getting a smaller feed...
My Link Tree:
linktr.ee/purp...
My Channel:
/ @iammellbell
Instagram:
/ purpose_in_this_journey
Facebook:
/ purposeinthisjourney
Sweet girl, I am in awe of your strength and perseverance. I am heartbroken by your struggle and will keep you in my thoughts and prayers. We are in the midst of getting my daughter tested for MALS. She has so many of the same symptoms and is going downhill. She has some form of EDS and POTS, but so far nothing is helping her constant daily struggle w nausea, dizziness, migraine, extreme fatigue, abdominal pain, shortness of breath - the list goes on. Thank you for your incredible bravery and willingness to share your story to help those who come after you. I genuinely hope you find better health and relief.
Thank you so much
Ok so this is my 1st time ever commenting on anyone's video but i feel like this is very important to tell my story on this video , i am a 39 year old blk male and i to have been diagnosed with median arcuate ligament syndrome and have been experiencing everything that she has said in this video i really can remember when this started mabe when i was lil kid but ever since i could remember since 2015-2017 when i started feeling a lot of overwhelming abdominal pain and I started going to the emergency I had about four or five visits to the emergency room and they couldn't find anything then finally I switch my medical plan to Kaiser and have one visit to the emergency room and I guess they had better equipment and they were able to see the kink in my artery I actually have the picture and that was in 2021 so then I started the process of exclusion upper endoscopy colonoscopy stomach study stomach emptying stomach camera swallow vascular ultrasound and now all the doctors or sure I have a kink in my artery it is now June 26 2023 and they have my surgery schedule for late July laparoscopic . One thing that I didn't hear her mention about the symptoms all my pains on the right side and my abdomen going to my back and also under the rib cage . Well i hope this helps Luck Everybody hope you guys feel better
Hey! thank you so much for sharing your story. I am so sorry that you have experienced all of this, it is truly such a hard battle. I will just caution you to be careful with the laparoscopic surgery as I have been told by Dr Hsu (he has done over 500 successful surgeries is the US) that the laparoscopic surgery doesn't always have great results and can damage your changes of having future surgeries in the future, just something to consider :) Where abouts in the world are you?
I am in the United States California
How are you after the surgery?
Thank you for mentioning right side pain, that is exactly where my pain is but I have not been diagnosed yet. I’ve had numerous tests and they haven’t found anything and at the last visit they basically dismissed me and said I don’t know.
Several years ago I started dealing with a lot of health issues. I had so many tests done and no one could figure anything out. I did a lot of my own research and have been fighting for myself, setting up appointments when other doctors say nothing is wrong. A few years ago they noticed my celiac artery causing problems, but then I was told that wasn't an issue, then it was my Superior Mesenteric Artery, and then again told no, that wasn't anything, but I have continuously gotten worse. Just today I had another ultrasound and it showed celiac artery issues again and it says "possibility of Median Arcuate Ligament Syndrome". Listening to all your symptoms sounds crazy similar to mine! The rib pain! yes! Thank you for sharing all of this! I am going to watch your other videos now and want to hear more about the nerve block
Hey, I am so glad you found this video helpful, especially considering what you're going through, it is really encouraging for me to hear that as that is why I posted the video! :) I am so sorry you are going through this, it is so frustrating when you are very ill and the doctors say nothing is wrong and you have to fight for yourself. I am so glad to hear you are fighting for yourself though, because you are worth fighting for :) all the best, I hope you get answers and help soon
My daughter is going to Thomas Scholbach in Germany. Google him
I feel so sad hearing your story. I’m going through all of this right now and it’s so awful.
I'm so sorry you're experience all that, it is a very rough battle
I have EDS, POTS, MCAS (likely), some form of cervical instability, and just had my endometriosis stage 4 excised! Thank you for making these videos
awh thank you so much for thanking me :P :) I appreciate it. I am sorry you have all those conditions :( I hope your endo excision surgery helps you a lot! it helped me a lot :)
@@iammellbell it did help! Just now I realized that a lot of the symptoms I was attributing to endo, is something else that is still there. Ah! Trying to learn about comorbidities like MALS to see what I can do for myself :)
You described my life.
Oh my goodness I am so sorry! It is honestly such an awfully hard thing to deal with. I am glad you found you could relate though so you know you're not alone, but I also feel so sorry that you relate 😢 I'm cheering for you and hope your hanging in there
@@iammellbell thank you so much. Maybe now I can try to get some help knowing this. I have EDS lll POTS MCAS delayed gastric emptying and have been diagnosed with MALS also. But that diagnosis was made in Texas. Docs here in Louisiana know nothing about those things. I also have ribs that are not formed right. Actually I have every symptom you talked about
@@lynnettebroussard2839 oh yes, I know the pain of the docs in your area knowing nothing about it. I really hope you get the help you need, sounds like you have a lot to deal with
My lord you've been through so much, how long was all this going on? Were doctors helping at all during?
Thanks so much, the worst of it was a few years. I think the doctors had good intentions but mostly just had no idea how to help
Can you talk about your ear problems? My daughter has ear problems as well as all your other symptoms, but haven't seen anyone else talk about ear issues. She has an ent appointment next week, but I know we will be gaslit again. She has hEDS, pots, mcas, sibo. She's being seen to check for vein compression next month with Dr Thomas Scholbach in germany
Hey Mia, I am so sorry for what your daughter is going thorugh
Did you experience shortness of breath?
Yes! But could be because of POTS as well but also pain when taking deep breaths!
But can you have mals and gastroperesis..?
yes totally, someone could have both. They initially thought I had gastroparesis until we did a gastric emptying study that ruled it out for me