Does anyone know of an MCAS consultan... - The UK Mastocytos...

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Does anyone know of an MCAS consultant please?

JW50 profile image
JW50
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Hi all, both myself and my 13 year old son are diagnosed with MCAS but we're unable to find a consultant in the Staffordshire area.

I was diagnosed privately by Dr Croom in 2017 and have responded well to Nalcrom and my son was diagnosed earlier this year by the rare disease leas at Bham Children's hospital.

I was referred to a lovely Dr at Guys hospital and had a telephone consultation last week but she won't take me on as says that, as I'm 50 now, I'm going to need more support and she feels too far away.

My GP is not interested and refused to write an off licence Nalcrom prescription. I'm back in full-time work now and starting to miss it.

The Dr at Guys is going to ask my GP to refer my son to Dr Bethan Myers in Lincoln as she has a particular interest in paediatric MCAS but does anyone know of an NHS MCAS consultant in the Midlands please?

I also have Hypermobility Spectrum Disorder and 'mild' POTS. I am supported by Rheumatology at Cannock hospital.

Any info gratefully received, thanks.

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Jess-UKMasto profile image
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Hi JW, I'm sorry this isn't easier! Some doctors (including Dr Myers) do have limits on their catchment area and so they may not be able to take patients from beyond the immediate area. She is now full time in Leicester, as I understand it and is no longer in Lincoln so if you do reach out look for her in Leicester.

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