Mast Cell Activation Disorder

I was diagnosed about 15 years ago with just so Neue hypoallergic pots gastroparesis and later on MCAS before that decades of what they called fibromyalgia con fatigue syndrome, many miscarriages, and a lot of what they call just happened to be bad luck medical situations. I was recently sent to a pain management Specialist by another pain management Doctor Who worked with my spine doctor. He wanted me to have a consult with this person this person went over my extensive medical history examined me, and I told him I do not have a history of being super flexible if anything always uncoordinated and clumsy While my some of my kids are very flexible and can do all those wrist and arm things that I cannot do he examined me as I’m dealing with yet another episode of a side joint syndrome and then looked at me and said you REDS you have been all this time Is this possible as for all these years the doctors have been trying to figure out where my just saw Denoia came from as mine has gotten worse and worse over the last few years I have many specialist, dealing with each part of my body for my gastroparesis for a neurologically, my proprioception and Gate and Balance And I’m very sensitive to all medication which I’ve been told could be my mass cell issues. I guess I’m just right now Steine after seeing so many doctors for so many years any input or thought would be very welcomed and appreciated. Bless you.

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sue Lindsay

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Diagnosed EDS at 72 yrs ?

I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.

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About Pots,fibromyalgia,ehlers-danlos,&chronic-fatigue

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do you suffer from all 4..?? or have tips on how to manage them all at once?

94

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sue Lindsay

1m

Diagnosed EDS at 72 yrs ?

I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.

I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.

hi, my name is hannah! i live with many health issues, including status migraine, POTS, gastroparesis, MCAS, anxiety, and ptsd, most of which are related to my diagnosis of long covid. it sucks a lot but i’m hoping to connect with others who are similar!

#MightyTogether #

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…..