Mast Cell Activation Disorder

Hi, my name is UnremarkableMe. I've been diagnosed with EDS & Chiari Malformation, POTS, MCAS it has taken best part of 15 years, finally being diagnosed, only to face a different issue…. get treatment. Navigating this is nothing short of unbelievable but here I am looking for change

#MightyTogether #ehlers-DanlosSyndrome #ChiariMalformation

Hi, my name is Justme69. I'm here because

#MightyTogether #ChronicLymeDisease #Migraine #Depression #MastCellActivationDisorder

all clinically diagnosed.

I am in a horrible situation. Two years ago I was in a terrible mental state and my son obtained legal guardianship. It was a legitimate move in and of itself. However he lied to the court to make sure he was appointed. He reported that I was severely mentally ill - true fact. But he also reported that I was abusing thc as well. I had never touched the stuff. He was granted his request.

Fast forward to the present and I am in a much better state of mind in regards to thinking processes. I still struggle with my demons mostly resulting from CPTSD. The one and only coping skill I have been able to master is distraction. I live in an assisted living facility and I am the only one in my pod who isnt lost in the abyss of dementia. So there is no socialization possible for me. I spend my days doing various things online. I research a lot about my laundry list of physical and mental health challenges trying to learn ways to alleviate troubling symptoms. I do a little social media among my activities. The internet is my sole distraction coping mechanism.

The impossible situation started in the beginning of December. I started being hounded on social media about a financial grant available through the government for low income disabled people. A few days before Christmas I clicked on the link and the tumble into the abyss unfolded. I was the victim of a sophisticated identity theft scam. They didn’t get anything but my critical identification information before I realized it was a scam.

I took immediate action. 67 screenshots to document every communication. Unfollowing the 6 profiles involved. Reporting to the site administrators. Blocked their profiles. Deleted all messages involved. Changed all of my passwords and their recovery methods. Reported what happened to my son. I did everything I could think of to try to protect myself.

The scammers are not the direct culprit in the situation I am now in. On December 22, my son came to my residence and physically stole my iPad, my iPhone, and my Mac book. Every device I have and paid for entirely on my own. I immediately called the police. They said that they were not familiar with guardianship rights so they were not going to charge him with theft. They believed that guardianship automatically made it a civil matter. I had lost my only grip on self help.

He had made demands as to how my living facility treats me as soon as the courts gave him his title. I am not allowed to leave the facility without him is a biggie. I am trapped in these four walls with no socialization. My family of origin and my friends live halfway across the country so I don’t get any visits with them. Without my electronics there is just nothing for me as far as coping strategies and a connection with the outside world.

Christmas Day he returned my phone and tablet. He had wiped them clean of the programs I had put on them while I put my recovery process in motion. He left no internet access. No browser. Deleted my email address. He left Four programs that he decided were ok. But they don’t function without a browser and email. He then went a step further and hijacked my Apple account and made him the owner. He changed my birth year to 2020 so Apple thinks my profile belongs to a 4 year old and I have no privileges to restore it. He put a pin on every possible avenue to function on my devices. The only thing I could do was talk and text - but he destroyed my contacts so there was nothing. He is the only entry in my texting program. He completely made me a prisoner of these 4 walls. My psychiatrist and therapist are both accessed through telehealth. They are not reachable without a browser. I couldn’t even wish my family a Merry Christmas because I have no contact information. He has done so many abusive things that are not appropriate to go into but I think you can imagine. His abuses run the whole gamut except he has not hit me or SA.

Now the rest of the story thus far. I am a physical and emotional prisoner to myself. I am left dwelling upon all the things that make me think and feel worthless and undeserving. My flashbacks are on overdrive. My thoughts race. Lots of dissociation (DID being only one of many mental health issues). I have always had SI but now it is relentless. The voices become deafening. I use a sleep tracker for insomnia and the longest I have slept has been 1 hour and 18 minutes per night. I lost6 pounds last week. I am having dire problems with my physical health as well. I can’t begin to list them all but just know they are debilitating in their entirety. I am at a point where I don’t know what is mental or what is physical. And I am so alone with it all. The only way I am able to reach out right now is one of my staff brought me her tablet to borrow for a few hours. I can’t touch base with my other programs because he somehow managed to change the passwords.

The staff here are outraged at the things he is doing. To my knowledge there have been four mandated reports of vulnerable adult abuse made. One of the administrators helped me fill out and file court documents to have my son removed as my guardian. They are doing what they can to help but he is taking liberties that are not just causing me harm but also violate my rights as a breathing human being. He is also committing medical neglect as a result of an entirely unrelated matter. As a result I am having stress induced triggers of MCAS, Dysautonomia, POTs, several heart conditions, brain fog, memory issues, can’t eat, rapid weight loss, can’t sleep, already extreme physical pain has become almost intolerable, constantly feeling like something terrible is imminent, stomach motility, IBS flare, migraines the list goes on…

For someone on the outside it might be hard to understand why this affects me so deeply. But incidents from my past are so disrurbing that even my own brain can’t comprehend. It has been a valiant struggle to cope day to day. Distraction is it for me at this point and my son ripped that away. On top of my struggles, I am heartbroken about the possibility of losing my son from my life altogether. I don’t think he even comes close to the realization of the depth of damage he is doing. He says that is protecting me. From what? The scam has already done whatever it is going to do. My info is out there. It does not matter if I am treated like a 4 year old and isolated from everyone and everything. This is insane and is just wrong.

I made arrangements with my phone carrier to get a new phone and a new Apple ID. My son found out because he has a track on my line. He inserted himself into my account violating the privacy policy and dismissed that situation. I pay my own bills and I am the only authorized person on the account. Yet again, he is getting away with violating his power and keeping me in the most alone place I have ever been. He has completely isolated me from the outside world by a series of actions. Then to top it off I feel guilty. The vulnerable adult charges almost guarantee that he will lose his job. He is an RN for a hospice service. If he is convicted he will lose his nursing license. As severely as I am suffering from what I have shared and by what I cannot share in this forum. I do not want him to pay that price. All I want is for him to restore what he has taken and to understand what his other actions and inactions are doing to his mother. He was not raised to treat any living thing with such disdain - especially not in the name of love and protection.

This post was mostly a vent to try and make sense of this mess. It has in fact helped me organize some of my thoughts. I have been working on this post for almost 3 hours now. Am I overreacting? Am I simply regressing into my pothole of mental problems?

Thank you for your time and consideration for reading to the end.

Hello everyone, I joined in 2017, but never joined any groups. I’m 52 years old & have delt with chronic pain for 25 years. I have hEDS, RA, deafness, tinnitus, MCAS. I’ve had so many surgeries that I’ve forgotten some! 😂 I just wanted to find a group who understands instead of being given advice on what I need to do. Believe me in 25 years, I have tried it all.

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.