So fantastic to know that finally some GPs are beginning to understand this complex area. Gives me hope that women will be better supported in future and not have to go on the journey that so many of us have endured untreated for so long. Thank you
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.
It seems there is so much more knowledge and treatment in the UK. My daughter is 18 and went for her first allergy test at 2. We are still fighting for help even though she is text book for this condition. The dr says it is very rare, so not likely.
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.
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.
I have had a serious fungal and then bacterial infection once a month for fifteen years. It appears seven days prior to menstruation, then at the onset of menses, it inexplicably disappears. Five days of sloughing of the top layers of the skin. Repeat. I have been told ‘you are lying’, ‘you are a fantacist’, ‘hormones don’t cause rash’, etc. How do I access care?
Hi, thank you for sharing your story. I'm suffering from similar symptoms for a few years now with no much help from doctors. Good to hear that you doing fine . I would like to ask if that is ok? Did you needed a referral from you GP to see that professor? Was it NHS or private arrangement?. Thank you.
I have hypermobile ehlers-danlos-syndrome and pots, I've just been diagnosed with hereditary alpha tryptasemia, I'm so worried I'm going to have an anaphylaxis and not have an epi pen, my twin sisters started randomly
My 7 years old dauther with mastocitosys started after covid with serious health issues.. And in february this year the doctors come up with the diagnosis of indolent systemic mastocytosis. Now I find than bond between covid and her illness
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.
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 ...
Great informative talk, thank you 🤓 Chronic illness and similar topics are crucial to be better understood, from a holistic point of view. Your in depth, personal experiences as well as studies and training based knowledge is much needed. Especially in the cultures where medicine and health care is so Western(ised), simplified, as well as underfunded 🙏 Also, just to note: "Psychosomatic" doesn't mean 'just imagining it'. Instead," (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress." A high percentage of our illnesses are of this origin, because we are holistic beings. Our bodies, minds, emotions and psyche are intertwined, communicate and affect each other constantly. The function inseparably, as one entity. Indeed the various illnesses can be wonderfully, increasingly accurately described by medicine and neuroscience regarding what is happening in our bodies on the physical level. At the same time, the complexity and the back and forth of cause and effect is due to our complex functioning. Trauma studies, epigenetics and other fields also have immense contribution to gradually understanding the hows and whys of our physical, mental and emotional landscape. Best wishes for the mission of mindfulness and helping others to live integrated and content lives within the human experience of joys and struggles 🌱🌏
I hope this young lady is still doing well. I suffer and have had all those tests too. I’ve seen so many damn specialists it’s beyond nerve racking!! 🤬 My severe symptoms of not being able to breath, chest tightens, windpipe narrows, I cough violently until my back feels broken! Coughing up tons of mucus all day. I haven’t slept in the bedroom with my husband for over 2 friggin years now. I am so thin, I look like I’m at deaths door. I am getting a referral to a Mast Cell specialist in Boston. They will be inundated with all my medical records from the past 3 or more years. I can barely function anymore. This has seriously crippled and debilitated my life. Filed for SSDI but we know that will take forever to even get word about it and they’ll probably end up denying it anyway. Bastards! 🤬
i am not medically trained but my wife is a doctor who doesn't practice any more she asks for my advice as i am constantly researching etc, i have a hypothesis and i am hoping to find medically trained people that can prove it in relation to mcas and long COVID . and vaccine side effects etc, when i was a young child i was a healthy child until around 11 years old i was hit by a car and received a damaged brain i still to this day have a bruise on my brain i cant spell remember names or dates etc but my brain works very different to most people it find clues or bits of puzzles and puts them together it hard to explain really, anyhow my hypothesis is mcas is a neurological condition it works on the same pathway as nicotine caffeine and vitamin b1 etc for some reason i think the biogenic amines in food are interfering with the never signalling in the autonomic nervous system etc how i come to this idea is i went 2 stories high and landed on my head , i got hay fever allergies etc after , then in my early twenties i had another accident and received bad whiplash which has damaged the discs etc in my neck , there are studies showing that neck injuries cause mcas symptoms etc, now i spent nearly 30 years doing everything i could to heal my gut you name it i have tried it, since eating only beef lamb and salt and water my diet was so clean i could add things back in one at a time different chemicals stimulate different nerves which create different symptoms in different body parts etc any way i added coffee back in my diet and reacted to it so i looked for caffeine retaliated to nerves system , etc i tried nicotine chewing gum as nicotine helps with the half life of caffeine in the body but in my case i got worse so i look at nicotine pathway etc, i found that coffee and nicotine both deplete thiamine b1 in the body , so i started to look into thiamine etc , it was used for treatment for seriously ill COVID patients and nicotine was used to treat COVID as well and smokers didn't get seriously ill from COVID so then i looked into ivermectin effects on the nervous system and you guessed it , now after my neck injury i developed psoriasis and gilberts syndrome neither of these are in my family yet are suppose to run in families i have healed both now how is that possible as i was told that cant happen. i had psoriasis for a few years i took selenium and milk thistle and it cleared up over a year or so my liver test still showed i was jaundice and you could see this in my eyes and skin etc my doctor wife would always point it out etc, just after i cleared that up the psoriasis, i got glandular fever which really effected my energy levels etc but i wasn't to bad that went on for 2 years then i got really ill and had every test they could think of they couldn't work out what was going on they gave up and sent me to a endocrinologist it was there i learnt that i had contracted the mumps and learnt about amines in food etc since going on a meat diet and drinking chlorine dioxide i never get yellow or have bowel problems or yellow stools etc which was a daily thing for me for decades also as the years went by i would be sitting on the toilet and saliva would pour out of my mouth with the pain from my bowels i have read that this is from the nervous system, lately i have been taking b1 supplements and it seems to be helping with my nerves etc as i still get pain in my left side from my neck, so i believe that COVID is a bio weapon that effects the nervous system as i have read that the same symptoms can be achieved by the nervous system and spinal injuries to the neck can cause mast cell activation . now i am not claiming that every person with mcas has had a tbi or i neck injury but i believe viruses are damaging the nervous system some how this part i cant work out as i am not a doctor that can run tests on people , maybe they deplete vitamins and minerals etc as i have researched that the modern diet eg carbs block the absorption of b1 as well so if people have low levels by our modern diet then get a virus which puts the system under stress maybe this could be enough to create a chronic condition etc, wishing you and your family all the best by the way don't ever let your daughter get morphine i died on the operating table from it maybe this is why i was sent back ?
Omg the gaslighting is so real from general drs … I basically diagnosed myself and told the dr I need an epi pen that my breathing had gotten worse. He said no that I need to get skin prick test first!!!!! I was furious. If I die from anaphylactic shock then this Dr is also dead.
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.
I know someone who suffered for years with similar "we don't know" and "we think it is this" from doctors. She persisted and was finally diagnosed with Mastocytosis. I think it is related to MCAS, but I do not know much about either condition.
