Anyone else been here?
I’m currently in hospital, lost so much weight, as of February I started reacting to everything out of the blue, all food, perfumes, detergent, fragrances, food smells, tooth paste, metals (my watch I’ve owned and worn for 10 years) medications even ones like movicol and standard IV fluid giving me itchy skin, throat, tightening of throat and extreme flushing. I also started having allergic reactions to sunlight out of the blue 2 months ago, full body rash, nausea, tachycardia and flushing.
I’ve been in hospital for 8 days and they’re confused, I’m down to brown rice, plain chicken and venison, I’m severely underweight as the stomach ulcers keep getting worse, h.pylori was negative so they have no clue why I have them.
I’ve seen four consultants in different specialities gastrointestinal, immunology, hemotology and respiratory due to the sudden extreme worsening of my asthma one month prior. None of them can make heads or tails of it, they all say it’s very real but very complex and they have no idea how or who can tackle it, but they’re trying to discharge me while I’m losing weight, can’t tolerate supplements, medications, or feeding tube formulas due to severe reactions to vitamins and minerals. I even had a reaction to harttman solution IV (basic electrolytes) with flushing, tight throat, itchy eyes, nose, ears mouth and throat that had to be stopped.
They don’t understand PGD2 (prostaglandin D2) results as it’s not standard NHS testing, but mine exceeded the assay limit on a non flare day meaning the mast cell burden is unusually high. IgG4 was high, as was IgE three times the upper limit.
I’m starving, unable to tolerate intervention and no one knows what to do with me. I’ve tried sodium cromoglycate a few times and it burned my stomach so I’m hesitant to try again. H2 blockers also give me horrible reactions. Not to sound doom and gloom but it genuinely feels like the end…
Referrals to specialist clinics in the NHS were rejected because I’m not deemed serious enough
I’m 95lbs and 173cm currently and look like a skeleton, staff are worried but they’ve essentially said they have no clue how to intervene or help without causing a reaction