Mast Cell NHS Consultants?

[aimee68]

Hi! I was wondering if anyone could share some names of NHS practitioners who have dealt with or have an interest in mast cell disease. My GP suspects I may have it and has asked me to try and find a specialist as there isn't one in our immediate area. I have contacted various mast cell charities but they have said they can no longer share names because of changes in GDPR. Happy to travel wherever in order to get a diagnosis. I live in Oxford and can easily travel to London, and I have family in the South West so spend lots of time there too. Can travel further if needs be.

I started to fall ill around 18 months ago. After a sixth month period of monthly chest infections, severe vitamin D deficiency, and an incredibly stressful period during which I was having panic attacks every day, I was rushed to hospital with what I was told was an asthma attack. After a repeat attack a month later I was diagnosed with asthma, despite having no childhood symptoms or any prior indication of breathing problems.

The months following this I began to struggle with a myriad of other symptoms, the most disabling being extreme widespread pain and fatigue. I was referred to rheumatology and diagnosed with fibromyalgia.

My GP has since referred me back to rheumatology as my blood results have remained mildly abnormal and my other symptoms have become more bothersome leading her to question my diagnosis. I have also been referred to respiration as my asthma is very treatment refractory.

I have had allergic rhinitis since childhood, and used to have eczema. Now, I am getting extremely bad hot flushes and seem to overheat upon the littlest exertion. I get excessively sweaty during these episodes but only around my face and head, with red flushing too. My doctor has ordered bloods to investigate menopause, but I am only 20!! I get seemingly random episodes of severe itching, usually my legs at night which I treat with hydroxyzine. I also get episodes of itchy palms, feet and scalp. I also have nights where I cannot sleep because my throat is so itchy. I get episodes where I can't swallow very well, which led to a gastroscopy showing eosiniphilic oesophagitis and chonic gastritis on biopsy. I get periods of abdominal pain and have gained lots of weight that I cannot shift since becoming ill.

I have noticed patches of tiny freckles appearing on mainly my chest and upper arms. I have also had patches of petechiae from sun exposure, as well as patches that have appeared after scratching on my thighs, but they have all faded within a couple days. I bruise and bleed very easily and take ages to heal. I got a split lip that took about six months to heal! My gums are always bleeding and very inflamed. My dentists worry about my gums even though I have good dental hygiene and the teeth themselves are perfectly healthy.

My worst symptom is still the pain, which has left me bedridden on most days. Everything hurts to use (hurts to walk/stand, hurts to wash my hair in the shower, hurts to chew etc.). It wasnt until my doctor started considering the asthma, itching, temperature control etc. in conjunction with the pain that she suggested MCAS. Before this my pain was being treated independently.

I have been on montelukast for about six months as I was having bad reactions to most of the inhalers I was trying, and whilst it has helped somewhat with the asthma and reduced the reactions I have to my cat (usually my eyes swell up and itch until I can hardly see!), it hasn't done anything for the other symptoms.

My doctor has prescribed ketotifen for me to trial which I have been taking for a day now, so I think it is too early to see if it will help at all.

I already use a steroid inhaler twice daily, a steroid nasal spray daily., and allergic eye drops when my eyes itch and swell.

I was recently diagnosed with ADHD, and the medication I take is almost a miracle cure for my daytime sleepiness and fatigue. I used to sleep almost all day every day, but now I can stay away (sometimes to the point of insomnia!) I take 60mg lisdexamfetamine every day, clonidine at night, and methylphenidate as needed.

I have been weaning down from 60mg of prozac with intentions to start duloxetine to help the pain.

I also take omeprazole, naproxen, co-codamol, vitamin d supplements (prescribed) and a multivitamin.

Any help or advice for managing symptoms between now and seeing a specialist would be a godsend! My GP is amazing and willing to trial medications given they do not major side effects.

Thank you in advance!