Megan's story

As a child Megan had mild allergies to hay and tomatoes, suffering from anaphylaxis for the first time as a teenager. Now she is wheelchair bound and is fighting for more awareness of her condition. 

HOW IT BEGAN

My real issues began before starting University, when I was rushed to hospital with a suspected brain infection, but all of the tests, including several spinal taps, came back clear. From then my allergic reactions intensified and became more regular.

My health issues worsened during my honeymoon – I experienced anaphylaxis for the second time in my life after dinner with my husband, but we simply put my other symptoms, like vomiting, down to food poisoning. That night my husband woke to find me convulsing and struggling to breathe. When help arrived, the language barrier led to paramedics accusing me of being on drugs; eventually I was treated with steroids which helped me to slowly recover. Back at home we visited Addenbrookes hospital for answers, but additional food allergy tests came back clear and I was told that alcohol had most likely provoked my existing mild allergies to become more severe, so I was sent home.

Megan’s health deteriorated 10 days after giving birth to her daughter in 2018, when she developed sepsis from multiple infections.

TOWARDS A DIAGNOSIS

Antibiotics, blood thinners, and opioids were all tried, but over time I developed more symptoms like extreme bloating, abdominal pain, and regular diarrhoea. I was misdiagnosed by my GP as having IBS. A few months later after I underwent surgery for a previous injury I began vomiting, with blisters and reddening around the dressing indicating an allergic reaction.

As time went on, I developed even more reactions to food, but was still diagnosed with just IBS, so more tests were done and I was further diagnosed with Wheat-Dependent Exercise- Induced Anaphylaxis, gluten intolerance and more unknown allergies. At this point I was regularly experiencing severe whole body urticaria, erythema, angioedema, raised scratches across my body, blood and mucus in my diarrhoea 15-20 times a day, inability to eat several food groups without severe pain in both my stomach and abdomen, black stools from stomach bleeding, and excruciating pain. I tried treating my symptoms with over the counter medicines, prescribed medications, and pain medications but nothing was helping.

My doctors were confused about my diagnoses and intolerance to treatments, so they began investigating other diagnoses like colitis or inflammatory bowel disease, but again all imaging and tests came back clear, so I was put onto high-dose steroids for ten months. At this point my husband and I began to do our own research into what could possibly be going on with me – that is how we came across Mast Cell Activation Syndrome, and I was shocked to find that many of my symptoms matched the criteria for MCAS.

With support from a new GP, I was able to begin being assessed for MCAS with a referral to an Allergy Consultant. They agreed that MCAS seemed very plausible, and I was referred on to another centre where they had several doctors aware of MCAS. After assessment, I was diagnosed with severe chronic urticaria, chronic angioedema, and very likely MCAS, but they needed to rule out Mastocytosis with blood tests. I received a negative result for Mastocytosis, but then COVID-19 came along.

I was hospitalised in 2020 with COVID-19 and thought I was going to die. But I still think of myself as being more stable back then, than I am now with my MCAS symptoms. 

GETTING SUPPORT

Since recovering from COVID-19, Megan was admitted to hospital with extremely low blood pressure. A heart ultrasound found that an artery had collapsed from the dehydration and stress that her body was under from the constant MCAS reactions. I collapsed from a reaction to ECG adhesive with erythema, swelling, low blood pressure, falling SATS. Eventually I was discharged with no real plan in place – my husband had to go out and buy a wheelchair as I couldn’t manage to walk without collapsing.

Then one night my husband woke to me vomiting and unable to speak properly, with a drooped face. The paramedics confirmed that I was showing all the major signs of a stroke. Nevertheless, my brain scans were clear so I was subjected to more testing until I had another dangerous seizure, and Neurologist decided that I must also have had a hemiplegic migraine. The next day a pharmacist visited me and realised that all of the stress on my body from the MCAS symptoms, as well as the dose of Tramadol I was on, were lowering my body’s ability to fight seizures. I was immediately taken of Tramadol, but although most of the other drugs I was on were also proconvulsant, the risk of coming off them outweighed the reward. In hospital I was also attached to intravenous hydration and banana bags.  

Dieticians at the hospital decided I needed an NG tube to deliver nutrients to my body as I was unable to tolerate food. A day later though a Gastroenterologist wanted the NG tube to be removed, believing I was just suffering from IBS and should be sent home and despite our efforts to make him understand my diagnosis of MCAS, which is confirmed by several specialists in London. We demanded a multidisciplinary team meeting where the dieticians where adamant that I needed to be tube fed. After some disagreement, it was finally agreed to move me from an NG tube to an NJ tube.When the time came for my NJ tube to be replaced, this had to be done without any anaesthetic or pain relief because of my history reacting to them all.

I then began rehabilitation with physiotherapists to try and get me walking again. There were discussions about sending me to a rehabilitation centre, but after spending the last month and a half between two hospitals I wanted to stay home with family, and got referrals to community physiotherapy, dieticians, neurology, and gastroenterology as well as continuing with my consultants’ appointments in London.

My consultant has identified that there is a strong possibility I may be dealing with Gastroparesis and Ehlers Danlos syndrome; I am now awaiting a referral to be assessed by an Ehlers Danlos specialist. For now, all I can do is keep up my physiotherapy, try my best with feeding, and await more hospital appointments.

Megan has been improving slowly and is regaining strength with hopes to be able to walk soon, but this could take weeks or months. There is also a risk of permanent deficit due to the severity of Megan’s ongoing paralysis and circulatory issues. She remains in a wheelchair while continuing with physiotherapy.

Mast Cell Action: What can be done to help patients like Megan?

MCAS is a poorly recognised condition within the NHS. It has no natural ‘home’ in any one specialism, with patients often having to see multiple doctors for various symptoms without a conclusive diagnosis. There is a need to raise awareness around mast cell disorders, listen to patient experiences, and support more research to better understand and treat the condition effectively. It is our ambition that all patients will be supported in a way that enables them to bring their condition under control and live a more normal life.

The research into MCAS is growing, particularly in the US and Germany, as is clinical recognition of the symptoms. MCAS patients can have many similar recognisable symptoms, it just takes time to take a detailed history and recognise the patterns.

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