Hi All.
I was recently evaluated for MCAS by Dr. Alexandra Croom at the Spire Hospital in Leicester. I'm posting this for the other crazily reactive PWME out there who want to rule this out.
Dr. Croom is one of the few allergy specialists in the UK who is capable of a definitive diagnosis of MCAS. Sadly, she did not provide this in my case...she said it was highly likely that I had MCAS but that my history of classic allergy and suspected Lyme was clouding the issue.
Dr Croom is pleasant and no nonsense. She lets you tell your story first and then asks questions. She told me I was a complicated case (hmmm) and that I'd have to "cross the Rubicon" and get over my aversion to trying new medicines and foods, if I wanted to improve. She gave me a brief physical examination, presumably looking for eczema and urticaria, which there was none of that day, of course.
The only investigation I had was a tryptase test. Ideally she would have done a "full workup" on me but said the hospital wouldn't be set up to do that for at least another month. Bear that in mind if you're thinking of scheduling an appointment. Oh, and if you do make an appointment, be sure to mention MCAS as they allot an hour for that, as opposed to half an hour for other appointments.
To start with, I'm to take an antihistamine for a month (if I can find one I tolerate) and see how I go. I will then ease in sodium cromoglycate before meals and we will re-evaluate the situation. Dr. Croom has a special interest in food allergy so it is useful if that is your problem.
Once the tryptase result is known, we may pursue getting further assays of mast cell mediators. She said patients generally respond favourably to relatively low intervention treatments.
My potential Lyme diagnosis interested Dr. Croom as she hadn't come across a patient with this before. I told her I was a member of a site where there were quite a few patients with both Lyme and MCAS. She seemed unaware that there was any sort of correlation between the two.
Anyway, Dr. Croom has requested I update her when I receive my Lyme results, which is reassuring.
Good luck if you decide to go this route. It's pricey but worth having the diagnosis and support in place, for when you need drugs and supplements to treat your other conditions.
(Today I received a copy of her letter to my GP. Unfortunately the original had been sent to another surgery in town! That will be the fault of Spire Hospital grrr.)
I was recently evaluated for MCAS by Dr. Alexandra Croom at the Spire Hospital in Leicester. I'm posting this for the other crazily reactive PWME out there who want to rule this out.
Dr. Croom is one of the few allergy specialists in the UK who is capable of a definitive diagnosis of MCAS. Sadly, she did not provide this in my case...she said it was highly likely that I had MCAS but that my history of classic allergy and suspected Lyme was clouding the issue.
Dr Croom is pleasant and no nonsense. She lets you tell your story first and then asks questions. She told me I was a complicated case (hmmm) and that I'd have to "cross the Rubicon" and get over my aversion to trying new medicines and foods, if I wanted to improve. She gave me a brief physical examination, presumably looking for eczema and urticaria, which there was none of that day, of course.
The only investigation I had was a tryptase test. Ideally she would have done a "full workup" on me but said the hospital wouldn't be set up to do that for at least another month. Bear that in mind if you're thinking of scheduling an appointment. Oh, and if you do make an appointment, be sure to mention MCAS as they allot an hour for that, as opposed to half an hour for other appointments.
To start with, I'm to take an antihistamine for a month (if I can find one I tolerate) and see how I go. I will then ease in sodium cromoglycate before meals and we will re-evaluate the situation. Dr. Croom has a special interest in food allergy so it is useful if that is your problem.
Once the tryptase result is known, we may pursue getting further assays of mast cell mediators. She said patients generally respond favourably to relatively low intervention treatments.
My potential Lyme diagnosis interested Dr. Croom as she hadn't come across a patient with this before. I told her I was a member of a site where there were quite a few patients with both Lyme and MCAS. She seemed unaware that there was any sort of correlation between the two.
Anyway, Dr. Croom has requested I update her when I receive my Lyme results, which is reassuring.
Good luck if you decide to go this route. It's pricey but worth having the diagnosis and support in place, for when you need drugs and supplements to treat your other conditions.
(Today I received a copy of her letter to my GP. Unfortunately the original had been sent to another surgery in town! That will be the fault of Spire Hospital grrr.)