A doctor shared a list of symptoms that can be associated with a ‘massively underdiagnosed’ condition, including breathlessness, dizziness and fatigue
A ‘massively underdiagnosed’ condition can cause a long list of nasty symptoms, including breathlessness and pain all over the body, according to an NHS GP. Dr Ahmed, who shares educational videos online as @Dra_says, explained the symptoms that can be associated with Mast Cell Activation Syndrome (MCAS) in a recent post.
As per NHS research, MCAS is a condition that ’causes severe allergic symptoms. The symptoms of MCAS range from severe itching and swellings to full-blown allergic reactions (anaphylaxis), which may be life-threatening.’
If you believe someone could be having a serious allergic reaction, for instance, if they’re struggling to breathe or breathing becomes very fast, call 999. Unfortunately, MCAS can be difficult to diagnose, says Dr Ahmed, as it can cause ‘almost any symptom’. As such, he believes the condition is ‘massively underdiagnosed’.
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The expert explained: “Mast cells are everywhere in the body. They’re in the skin, the gut, the respiratory system. Their main role is in the immune system, and they are constantly checking for any allergens, and if they detect one, they release histamine, which gives you lots of nasty symptoms.
“However, in MCAS, they get triggered by things that shouldn’t really trigger them, such as food, heat, cold or even stress.” Dr Ahmed continued: “If you’ve got MCAS, you can have almost any symptom.” However, he did share a list of some of the most common symptoms.
Common MCAS symptoms
- Skin writing
- Pain all over the body
- Feeling tired all the time
- Heartburn
- Reflux
- Breathlessness
- Palpitations
- Dry eyes
- Dizziness
- Fainting
The doctor says skin writing is “where you get a raised red reaction from very minor touch to your skin, even simply stroking your skin with your finger can cause this.” He added: “But it’s important to know almost any symptom can present, which is why it is very hard to diagnose.
“Now, to diagnose this is very difficult because the tests always come back normal or borderline, but there are some specialist tests and criteria we can use to help diagnose this. But these tests aren’t fully available on the NHS yet.”
How to diagnose and treat MCAS
Dr Ahmed said: “One of the best ways to help us diagnose it is with a history and by starting treatment to see if you have a good response. Now, there’s no specific cure or treatment, but treatment involves avoiding triggers, and H1 and H2 receptor antagonists.
“If you’ve got MCAS and you get started on treatment and it works, you might find what you’ve been diagnosed for gets completely better. I had a patient with fibromyalgia who got diagnosed with MCAS and was started on H1 and H2 receptor antagonists.
“Their fibromyalgia almost completely got better, and that’s because they didn’t have fibromyalgia in the first place. It was all down to the MCAS.”
When to see a doctor
The GP acknowledged that the common symptoms he shared are not always linked to MCAS but said doctors should dig deeper if their patients keep coming back with ongoing symptoms and are not responding to treatment. He concluded: “If you’ve got all these symptoms, it doesn’t mean that you’ve got MCAS, but if your symptoms aren’t getting better, please go and see your doctor.”
According to The UK Mastocytosis Support Group, a charity that supports mast cell disease patients, ‘because Mast Cell Diseases are rare (or rarely diagnosed), it can be difficult to find a knowledgeable doctor.’ The support group claims: “At present, Mast Cell Activation Syndrome is a condition that suffers from insufficient recognition in the UK medical system.
“While it has been recognised in America by their Centers for Disease Control (CDC) as a condition (with its own ICD-10 code), it has not yet received such a code in the ICD codes used worldwide by the World Health Organization.”
