Thank you to Sophie for sharing her MCAS story; 'Unveiled by Sophie' at one of our weekly community Zoom sessions. Come along to meet others like Sophie, you are not alone. www.tickettail...
I would love to share my story, it is so similar to this strong, empowered woman's story. Thank you for amplifying our experiences, if we "boost the signal" by getting more eyes and ears on our health issues, we increase our chances of attracting more funding for research.
So very sorry to hear your experience with certain doctors on NHS. Unfortunately this is common in people with EDS. I have had similar experiences. My identical twin sister was diagnosed with hEDS in 2014. But my doctors didn't believe me. The first rheumatologist i went to see said "...isnt it handy that your twin sister has been diagnosed with the only form of EDS that has no genetic markers". She went on to state that i wasn't even hypermobile. So i printed out my sister's two diagnosis letters and took them to the hypermobility clinic in London where i was diagnosed on the same day with hEDS. I also have low BP, POTS, many allergies and have chronic uticaria which physio feels is likely MCAS.
Your story took me back to when my hip used to dislocate when walking along the street. Horrifying - and then it'd go back in and I could walk on like nothing had happened. Later the same thing happened with my shoulder and of course no health professionals believed me. Recently diagnosis myself with MCAS, POTS and hEDS and then had it confirmed by a GP who knows. Just starting that year of targeted testing and I am 62 and the hip dislocations started 25 years ago. Long journey but it finally feels like it has started.
It may not be life threatening, but it is life stopping. My18year old has been on the journey to a diagnosis for 10 years. Pots, allergies, rashes, anxiety etc and it is a fight every step of the way to be taken seriously.
I’ve just recently started reacting to foods all sorts particularly gluten alcohol coffee tomato soy. Dr has no idea about allergies or even histamine intolerance… thankfully I’ve found a naturopath who’s having me tested for sibo/leaky gut - estrogen dominance looking to treat the root cause not just symptoms.
Unbelievable! I can’t believe what you have been through. You should write an open letter to every medical professional that you have seen. It may help another person. I get so angry about professional assuming mental health! I have EDS and I was diagnosed after my son was when I was 30 years old. I was very much dismissed with his symptoms. I was blessed that I was not very symptomatic at that time of diagnosis, so I haven’t struggled to get a diagnosis. In regards treatment I tend to just do my research and not leave the GP room. Firmness is the only way. Unless you go private. I have just been diagnosed with with POTS and I’ve just had my second mast cell flare up. I’m currently floored and have had about six appointments with the GP. I have another one today and I’m not leaving until I am referred to a immunologist . Thankfully my last cardiologist appointment letter referred to flushing and the benefit of on going antihistamines. So this evidence will be helpful. Currently the antihistamine are doing nothing to help symptoms.I’m swelled all over, itching like crazy, debilitated, low blood pressure (much more than usual) stomach pain, bloating and I’m spotting blood. I’ve had these symptoms for over three weeks now. It really frustrating because I was doing so well and I feel like this has set me back so much. Your hope message is well received. You’re hormone reaction is interesting. Any advice for identifying triggers. It seems to be remove everything and start introducing. For your awareness, I developed fibromyalgia after my third child and that really changed by life. I was 36. There is little advice about the impact of pregnancy on our bodies. Just something to consider. Also my three boys all have EDS or Hypermobility syndrome. They all have daily physio and each have different symptoms which we manage. But it’s mainly been private care (when I was working) which highly educated me to battle for them on the NHS when they have new symptoms. Managing is truly about balance hope and mindset. I’m currently on benefits and want more than a anything in the world to have a job. Being a mum, carer and battling chronic health has taken 8 years of my working life. Obv love being a mum and carer but I need something else now for my own sanity. But I just don’t know how I will balance a Job and health, also financially. I don’t want to set myself up for failure. I always aim a bit to high in regards my health and end up on my bum. Still haven’t mastered pacing. I’m starting a volunteering role to test out my ability. So any advice on working with chronic health would be greatly appreciated 😊 You’ve done so well
This sounds very similar to some of my symptoms! I’m at a point where I can’t eat anything without reacting, my heart rate shoots up as soon as I stand up with dizziness, rashes all over, fatigue, migraines etc. Regular doctors just wanted to put me on allergy shots and prednisone and Zyrtec twice a day but I knew there was a root cause. l just did some functional medicine testing like the mycotoxin test and I found out that I have high levels of toxic mold in my body.
Omg you have been thru loads it's an absolute nightmare!! Sorry to hear this, as you're so young.. I am so glad you have got a handle on this... please tell me where I can I get a referal I am suffering so bad ...
Hi Sophie Thanks for your amazing story - everyone is different but we all recognise some of them in ourselves. Do you have any chronic pain/fatigue issues? Could you list what medications you need to take? And, would be fascinated to know which business you have created? Thx, Jed.
Have you looked into gut microbiome? Because if you have strains that produce too much histamine and less that degrade it, no amount of anti-histamines is going to be the answer.There are specific histamine degrading probiotics that hopefully can help.
