Median Arcuate Ligament Syndrome (MALS)

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Median Arcuate Ligament Syndrome (MALS)
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I’m new here!

Hi, my name is Carolyn. I'm undiagnosed and we are trying to get the FDA to recognize fluoroquinolone toxicity. I have neropathy, IBSD, severed tendons, and my body attacks itself. I have had a hip replacement, hysterectomy, thyroidectmoy and am getting my appendix out next week and pretty sure they will find MALS when the do 4 lapascoptic incisions during the appendix surgery. . I have had the same drs from Beth Isreal since they found the T cell Lymphocytes. probably 6 yrs.. they know its all from 3 pills of levaquin. yet it has taken yrs for them to listen about the pain in my stomach.. I want to yell at all of them. stop Gas lightning me this is real.. I have proved it over and over again.. I am only 56. this has been my life since I was 36. before that I was healthy active and happy.. Thank you for listening to my rant.. I am scared.. what if they find something worse than MALS. what if they find nothing. this pain is real. my muscles flip and contract you can see and feel the bulge like a baby kicking. feels like I am being stabbed and you can feel it flip back..

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #RheumatoidArthritis #PTSD

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I'm new here!

Hi, my name is wvgirl3. I'm here because I have PTSD, my daughter has MALS and I treat people all the time who don't have a diagnosis - but they're being medicated and having surgery that doesn't seem to work. I want to find ways to treat people so that they get well, not get worse.
#MightyTogether

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How are you doing with your #MALS #MedianArcuateLigamentSyndrome this year?

How are you feeling? How do you handle the ups and downs of rare disease like #MALS #MedianArcuateLigamentSyndrome ? Did you have surgery yet? Regardless, this is all here for support and 2024 I’m aiming to get better control of my health. Let’s support each other ♥️ #SafeSpace

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How are you doing with your #MALS #MedianArcuateLigamentSyndrome this year?

How are you feeling? How do you handle the ups and downs of rare disease like #MALS #MedianArcuateLigamentSyndrome ? Did you have surgery yet? Regardless, this is all here for support and 2024 I’m aiming to get better control of my health. Let’s support each other ♥️ #SafeSpace

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A little bit broken

It was time to buy a house. My boyfriend was ready to start looking, possibly find his next home, possibly find a flip, he didn’t know, but the time where he was currently renting was coming to an end.

Within a day of looking, that was it. He’d found one. Stumbled upon it driving around after work and contacted the realtor from his previous home sale to get a tour. (This is a story about experience, I promise. Just bear with me. We’ll get there.)

After the walk through, the excitement was palpable. The plans he laid out were grand, and he had them planned to a T. “This wall will go down, and I’ll put a door there. That will be the laundry, and here will be the guest room….”

Everything looked great on paper, all the ideas drawn in graphite and smudged with the massive rubber eraser on neatly lined grids. I’d even stopped by the hardware store to pick up paint samples just for fun and he had chosen a color scheme. Next thing we knew, he had the inspections lined up, and all.

The day of the inspections was ungodly hot, something obscenely over 100°F, and the AC was broken in the room we all decided to gather in to go over the findings. Why, you ask? Don’t ask me, I have no idea. Probably to make this story more amusing for the retelling down the line….

“The septic’s fine,” one man says. “Absolutely nothing wrong.”

Something settled on my shoulders is lifted with those words.

“There’s no spiders, no beetles, it’s pretty clean overall,” the pest inspector says.

Another weight is lift-

“Except the termites in that wall, that wall, and over there.”

Slam. The weight comes crashing back down.

I turn to my boyfriend, expecting to see the same weight curving his shoulders forward, maybe making his features fall just a little. But instead he just nods and says, “Okay.”

Okay? Okay?

Nothing worrying, no hesitation, just a little nod and an okay?

It didn’t stop there. The roof needed to be replaced. Some siding. Insulation in the attic. The list went on and on, with terms I didn’t fully understand but sounded massive in my mind.

But he didn’t even flinch. Just nodded and gave another, “Okay.”

Okay. Okay. Was that code?!

Was there something I was completely missing or-

The next day the realtor called him with her recommendation on how to go in with an offer. He agreed and sent it in. I was terrified that the sellers would be offended and simply say no and the house, the ideas, all that planning would just be…. gone.

The following day early morning they accepted the offer, no counter.

As I sat there washing my hair later that afternoon it came to me that all those things had to go wrong, in order for the end result to be right….

And how that so often applies to life. (I told you it was about experience.)

How things have to fall a little bit apart in order to come together.

Not one thing in life goes truly to plan. There’s always something, some hiccup that alters the list just a bit.

But I guarantee if you go back and look, sometimes that slight alteration made it fall into place all the more snuggly.

This is something I understand on a very intimate basis.

I suffer from multiple chronic health conditions, many of them “invisible”, but every bit as debilitating.

Every day I have a plan, a road map, if you will, for how I want things to work out, and sometimes before I’m even out of bed, we have a hiccup. Sometimes I make it till after breakfast. Sometimes till evening. But the day would be suspicious if it actually worked correctly.

So often it can get overwhelming and I feel somewhat trapped in my own body, like I’m still that 17 year old dancer who could get up at 8 AM and go until 2 AM, every day with no problem…. But I’m not. I have a body that would riot if I even thought of doing that again, and would make sure I didn’t try again.

And I’ll admit, sometimes I get a little huffy about it.

But then I remember.

Sometimes things have to fall a little bit apart in order to come together.

Including me.

How boring I would be if everything just worked out perfectly.

Let there be hiccups.

Let there be errors.

I’m here for the typos.

The autocorrect, and the messages with *’s after that almost always lead to laughter.

The GPS that doesn’t take you to the right place, or the AI that can’t process that right now.

Wherever the road takes me, and however it decides to tell my story, I’m just going to sit back and enjoy the ride….

And remember…. How things have to fall a little bit apart in order to come together. (See, aren’t you glad you kept reading?)

#MentalHealth #AutonomicDysfunction #ChronicFatigue #ChronicFatigueSyndrome #Dysautonomia #Fibromyalgia #ChronicPain #PolycysticOvarySyndrome #MedianArcuateLigamentSyndrome #nutcrackersyndrome #EhlersDanlosSyndrome #EDS #IrritableBowelSyndromeIBS #Gastroparesis #InappropriateSinusTachycardia #NeurocardiogenicSyncope #POTS

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What doctor for MALS?

I just found out this exists and am wondering if it could explain my recurring abdominal pain. What kind of Dr should I consult? My primary care doctor has been monitoring me for almost a year and never mentioned this, so I was wondering if I should see a specialist?
#MedianArcuateLigamentSyndrome

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Pain.

We all just had COVID and my chronically ill body is not doing well. I am in a major flare of all my conditions. Today my body just hurts and feels heavy. Nothing makes it feel better. I can barely fet out of bed and need my cane. It all just hurts. I hate days like this and get easily discouraged. Sometimes this goes on for weeks and ruins everything. I don't even have the energy to force myself to try something else. So I just binge TV and lay here with a heating pad and trying to sleep the pain away.

It all just hurts.
#Endometriosis #PosturalOrthostaticTachycardiaSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ChronicMigraines #MALS #TBI #MastCellActivationDisorder

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Pain.

We all just had COVID and my chronically ill body is not doing well. I am in a major flare of all my conditions. Today my body just hurts and feels heavy. Nothing makes it feel better. I can barely fet out of bed and need my cane. It all just hurts. I hate days like this and get easily discouraged. Sometimes this goes on for weeks and ruins everything. I don't even have the energy to force myself to try something else. So I just binge TV and lay here with a heating pad and trying to sleep the pain away.

It all just hurts.
#Endometriosis #PosturalOrthostaticTachycardiaSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ChronicMigraines #MALS #TBI #MastCellActivationDisorder

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Newly diagnosed

#ThoracicOutletSyndrome

Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

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