Mast Cell Activation Disorder

My PCP and I have been doing this dance since July.

My daughter was diagnosed in September with hEDS. POTS. MCAS. She previously was Fibromyalgia. MN/CFS.

I finally got my doctor to dig further into my medical record and see for herself just how many symptoms I’ve had for years. Most were distressing enough to require treatment. I am on enough medications to open my own pharmacy.

She then started educating herself about Autoimmune disorders. Last month she gave me a head to toe examination. She had a checklist that we went over and she said I have:
hEDS. Already had POTS. MCAS. Autonomic Dysfunction.
possible Sjogrens already dc CFS and Fibromyalgia

So I was diagnosed ……,. But I wasn’t ……because she doesn’t want to put it in my medical records before I see.
a specialist/specialists for second opinion. She is a little uncomfortable because she isn’t knowledgeable about the disorders. I can respect that. Problem is there isn’t a specialist in the state that is both familiar and taking new patients. I am in a weird state of mind…..

Hi, my name is Ashrain. I'm curious about

#MightyTogether #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder

Hi, my name is michellec8599. I'm looking for for a dentist who cares for patients with mcas or multiple sensitivity issues. I'm very disappointed that the head of your organization commented on the the netflix "inflicted" doc and yet I can't find any mention of "mcas" or "mcs" anywhere in your system.

#MightyTogether

In January 2021, I became ill in ways that defied explanation. My body, which had always been a mess and a mystery, turned into a battlefield where everything seemed to go wrong at once. My symptoms were baffling to local doctors, and despite countless tests and evaluations, no one could provide answers. It was then that I made the decision to seek care at the Cleveland Clinic—a place known for its focus on complex medical cases.

Walking through the Clinic’s halls felt like stepping into a different world. There was a level of expertise and attention to detail I hadn't experienced before at local hospitals, where I often felt like a burden—someone too difficult to treat. Cleveland Clinic is a specialty hospital, attracting some of the best minds in the world, especially in rare diseases and complex conditions. Here, I wasn’t dismissed because my case didn’t fit neatly into a box. Here, I was seen.

From 2021-2023, I would spend hundreds of hours in doctors’ offices, undergoing test after test: MRIs, CT scans, bloodwork, autonomic testing, genetic panels, endoscopies, and more. My appointments bled into each other—GI, vascular, neurology, rheumatology, and cardiology—all working together to put the pieces of my medical puzzle into place. It was at Cleveland Clinic where I was finally diagnosed with a cluster of rare conditions: hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome, and gastrointestinal dysmotility. My body, a connective tissue disaster, was now mapped out with labels that explained why it had been betraying me for so long.

It wasn’t just about the diagnoses, though. It was about the process—the wear and tear of being a full-time patient. Each appointment chipped away at my mental and physical strength. I adopted mobility aids slowly, first a cane, then crutches, and eventually a wheelchair. It wasn’t until then that people started seeing my disability. Before the mobility aids, I existed in that liminal space between visible and invisible disability—a place where I looked “fine” to outsiders, but inside I was constantly battling a body that refused to cooperate.

In the fall of 2023, I went out on Disability. It felt like a loss, but also like a surrender to the reality of my situation. My body could no longer keep up with the demands of the world. And while that decision was incredibly difficult, it was necessary. The transition from the workforce to a life dictated by medical appointments was both jarring and isolating. Being a rare disorder patient is profoundly lonely. Local hospitals often hesitate to treat patients like me because my conditions are so specialized, so misunderstood. Cleveland Clinic, on the other hand, embraced the complexity.

I had multiple extended hospital admissions during that year, and each one felt like a lifetime. The mental toll of lying in a hospital bed for weeks on end, facing yet another abdominal surgery, was crushing. I lost count of how many times I’ve had feeding tubes placed, how many surgeries to repair my gut, how my once active body has been systematically taken apart and pieced back together. It was there that I had a total proctocolectomy—a surgery to remove my colon because its nerves had died and a duodenojejunostomy to relieve my SMA. These surgeries left me with an ileostomy, a permanent bag attached to my abdomen that collects waste. Each surgery came with its own set of physical scars and emotional wounds.

Living as a rare disease patient has taught me more than I ever thought possible about advocacy. The medical system is not designed for people like me—people who have conditions that most doctors have never heard of. There were countless times when I was told, “Your labs are fine,” or “It’s just anxiety,” but my body knew better. I learned to trust myself, to demand better care, to not take “no” for an answer. Every day that I wake up and face this uncooperative body feels like a victory. These are small health victories, yes, but they are victories nonetheless.

I’ve learned to take pride in those victories, even when they feel small. Every successful surgery, every day without a flare-up, every inch gained in physical therapy is something to celebrate. Being a patient—full-time, relentless—has taught me resilience in ways I never imagined. It has also taught me that the best care often means seeking out the right doctors, the right specialists, and not settling for less. Cleveland Clinic has become a lifeline, a place where I can be heard and understood, where I’m not reduced to just my symptoms. The toll of being a rare disease patient is profound, both mentally and physically, but it has also given me an unshakable strength.

Still, the isolation remains. It’s difficult to find others who understand this journey. Most people can't fathom what it’s like to live inside a body like mine—a body that feels like it’s 100 years old when I’m only in my 30s. But through it all, I’ve found a community of others with rare disorders, people who understand the loneliness, the grief, the resilience required to keep going. These connections, though few and far between, are everything.

My journey at Cleveland Clinic is far from over; there will be more surgeries, more admissions, more moments of despair. I’ve had to learn to advocate for myself, to push for answers, and to find strength in a body that continually tries to defeat me. But at the Clinic, I’ve learned to trust doctors again. I’ve learned that there are medical professionals who care if I live and how well I feel. They’ve never stopped fighting for me. More than just saving my body, my doctors have saved me. I’m determined to live a life worthy of what they’ve done for me.

For years, my body had been whispering things I could not hear. There were moments of fatigue that sank bone-deep, so heavy I couldn’t will myself to move. My legs, once my solid foundation, started giving out beneath me. Sensations tingled in my fingers and toes, like electrical currents surging through the wrong wires. But when you’ve lived with chronic illness for as long as I have—Ehlers-Danlos syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Ankylosing Spondylitis—it’s easy to lose track of new symptoms amidst the noise. How can you tell when another storm is brewing, when you already live in a constant downpour?

The search for a diagnosis, as many with chronic illness know, is an endless run of doctor's appointments, tests, and dead ends. The language of our bodies is complex, and deciphering it can feel like solving a puzzle with missing pieces. I would mention the numbness, the cognitive fog, the moments where my vision blurred at random intervals. But none of it stood out enough to demand urgent attention—until one day it did.

It started with a fall. The kind of fall that felt unnatural, like I’d been pushed by an invisible force. My legs gave way in an instant, and I hit the ground before I even registered what had happened. That’s when the whispers became screams. Something was terribly wrong, and I couldn’t say it was my EDS anymore.

I found myself in yet another neurologist’s office. By now, I was accustomed to medical professionals reviewing my already complex file with raised eyebrows, but this time was different. There was an urgency in the doctor’s demeanor as they ordered an MRI and bloodwork. They were searching for the tell-tale signs of Multiple Sclerosis (MS): lesions on my brain and spinal cord.

I’d heard of MS, of course, but in the periphery. I knew it was serious, progressive, and incurable. As I sat in the MRI machine, the loud clanging around me, I felt more like I was in a confessional than a diagnostic tool. I thought about how much my body had been through already. How could it possibly handle something else? After all, the connective tissue disorder had already taken my colon and most of my mobility. Did I have any reserves left to face a new battle?

The results came back, and there they were—white spots, small but undeniable, scattered across my brain like misplaced clouds. The neurologist explained the significance of those lesions, how they corresponded to the nerve damage that had been slowly wreaking havoc on my body. Multiple Sclerosis. A progressive disease where the immune system turns against the nervous system, attacking the protective myelin sheath around the nerves. It explained everything: the weakness, the falls, the electric tingling, the confusion, the sheer exhaustion. My body wasn’t just whispering—it had been screaming for help all along.

Hearing the words felt like being hit by a slow-moving train. It wasn’t sudden, but the impact was immense. Another diagnosis. Another fight. I couldn’t help but think about my body teetering on the edge of collapse. The MS diagnosis felt like it was threatening to bring everything down with it.

MS affects everything. It isn’t just the limbs or the brain—it’s the entire body. It’s the unpredictable nature of the disease that makes it so insidious. One day, you might be able to walk with the assistance of a cane, and the next, you can’t feel your legs at all. Vision can blur without warning, cognitive function can slip, and then there’s the relentless fatigue. Not the kind that a good night’s sleep can fix, but the kind that feels like you’re dragging an anchor behind you, no matter how much you rest.

For me, the MS diagnosis wasn’t just another illness—it was a permanent reminder that my body would continue to shift and evolve in ways I couldn’t control. It was one more thing I would need to accommodate, to adapt to, to plan for. I was no stranger to adjusting to new limitations; I had done it with EDS and all the complications it brought. But MS felt different. It was an illness that wasn’t just about pain or discomfort—it was about losing pieces of yourself, bit by bit, as your nervous system betrayed you.

Daily life with MS is a balancing act. On top of managing the complexities of my other conditions, I’ve had to become more mindful of how I pace myself. I plan around my energy levels, rationing out my stamina like a finite resource. I make sure I have access to mobility aids at all times, knowing that my legs might decide to quit on me without notice. I’ve had to become more forgiving of my body’s limitations, allowing myself the grace to stop when I need to, even when I’d rather push through. It’s humbling, frustrating, and often terrifying.

Emotionally, receiving the MS diagnosis was a form of grief. It wasn’t just about losing physical abilities—it was about losing the vision I had of my future. I already knew I wasn’t going to have a “normal” life, but this felt like a confirmation that my life would always be shaped by illness, by the unpredictable whims of my body. I mourned for the things I hadn’t yet lost, fearing the day they might slip away. I mourned for the days I felt mentally sharp and physically strong, knowing those days might become fewer and further between.

But in all the complexity and heaviness of this new diagnosis, there is also resilience. My body, for all its betrayals, is still here. It’s still fighting. And in this community of people living with chronic illness, with MS, with conditions that shift the ground beneath our feet, I’ve found a sense of belonging that anchors me. I’m reminded that we aren’t alone in our struggles, even though it often feels that way. In sharing our stories, we share our strength.

If you’re reading this and facing your own diagnosis, or you’re somewhere in the murky waters of uncertainty, I want you to know that it’s okay to feel everything you’re feeling. It’s okay to grieve, to be angry, to be scared. But you aren’t alone. There’s a community waiting with open arms, ready to catch you when you fall. Together, we’re stronger than we are alone. We may not be able to control the storm, but we can hold on to each other through it. And sometimes, that’s enough to see us through.

Community will keep my head above water. It always has. It always will.

#MultipleSclerosis #EhlersDanlosSyndrome

Hi, my name is Hank2024. I've been diagnosed with Hereditary Angioedema, and now waiting for either or both diagnosis of MCAS and Fibro.

#MightyTogether #Anxiety #PTSD

Dealing with Ehlers-Danlos Syndrome (EDS) and other chronic muscle and joint conditions has taught me a lot about how the body works under stress. One key takeaway is that when muscles are overworked or injured, they tighten up as a defense mechanism. This process takes up a lot of energy, so to conserve resources, the body smartly creates scar tissue to bind everything in place. It’s a clever form of resource management, designed to prioritize immediate survival needs. But the trade-off? Long-term function gets compromised.

One of the most important things I’ve learned is that getting those tight, restricted tissues moving again is the critical first step in recovery. Over the past decade, tools like foam rollers and massage balls have become mainstream. But while they’re great for some people, they don’t always work for bendy bodies. Our muscles overlap differently, and areas like joints require special care. Plus, when you add issues like Mast Cell Activation Syndrome (MCAS), dysautonomia, and fragile lymphatic systems into the mix, direct compression often does more harm than good for many of us.

For people with hypermobility, it’s all about balancing the release of bound-up tissue and restoring healthy function—without irritating the body further. Once the soft tissues regain mobility and inflammation calms down, the body stops compensating and is ready to rebuild strength and proper function and with even better body-mind awareness. Proprioception (the body's ability to know where it is in space, e.g. how you can touch your nose with your eyes closed) can improve, and daily tasks can start to become less burdensome.

It's all incremental though, hypermobile bodies deserve and need gentle progress.

I'm so thankful to the Muscle and Joint Clinic for their diverse and gentle approach to healing. Focused shockwave therapy brings instant relief to my tired muscles and red light therapy down regulates my nervous system. Getting myself into the rest and digest mode has been so vital to my healing.

While my symptoms can flare up in sudden and unpredictable ways, my recovery time is dramatically shortened. I most recently had a migraine with a brainstem aura that had me 1. worried I was having a stroke and 2. asleep for close to twelve hours and sensitive to light for more. I was worried about what that much bed rest would do to my recovery. Luckily, I have some more wiggle room when it comes to full bed rest. My strength and function have been rebuilt enough that I get a day off from physical therapy. A year ago, one day off would cause a cascade of debilitating subluxations and autonomic dysfunction. So while these days feel scary and like there's no end in sight, I'm sitting at my desk two days later amazed that I'm back at 80% function, and not the 20% I would be a year ago.

I’ve focused here on the physical aspects, there's also the emotional layers of healing. Underneath a lot of this body pain, there's definitely the younger version of me, ignored by doctors, teachers, and even childhood friends. I also have to look after her and remind her to not minimize the pain, to acknowledge it, talk about it, and seek the treatment I know I deserve.

#EhlersDanlosSociety #EDS #POTS #HypermobilitySyndrome #DegenerativeDiscDisease #AutonomicDysfunction #ADHD #neuro #Fibromyalgia #MastCellActivationDisorder #MentalHealth

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

Hi, my name is RosyPardalote5499. I'm here because

#MightyTogether #PTSD #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder