Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

My visit with UK specialist who can diagnose MCAS

Discussion in 'General ME/CFS Discussion' started by Allyb510, Mar 7, 2017.

  1. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    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.)
     
    Jennifer J, ahmo, antherder and 9 others like this.
  2. keenly

    keenly Senior Member

    Messages:
    559
    Likes:
    560
    UK
    Strangely enough I was looking on the net last week to find a UK specialist. I thoroughly believe I have MCAS which is activating my POTS symptoms. Multiple foods, herbs, creams etc make my blood vessels swell, legs ache and orthostatic intolerance much worse. You are right about not many people being in the UK.

    The main man is https://www.nuffieldhealth.com/consultants/dr-suranjith-seneviratne

    He is very expensive indeed. I have not seen him myself, but I inquired via email.
     
    justy, merylg and Allyb510 like this.
  3. Plum

    Plum Senior Member

    Messages:
    451
    Likes:
    319
    UK
    Would it be possible to share how much the appointment costs? And the tryptase test?
     
    Allyb510 likes this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,539
    Likes:
    24,649
    USA
    This seems very strange to me and is the opposite philosophy of my MCAS doctor who I have seen for almost 2 yrs. I had to remain on low histamine diet for a very long time and get meds compounded so they did not contain anything that I could react to. I would ask him, "can I try xyz food yet" or "can I color my hair yet" and he would absolutely say "no, not yet" and I listened to his words like the word of God LOL and am in remission now.

    Will you be tested for methylhistamine or prostaglandins in the future? My tryptase was always negative b/c I did not have mastocytosis but my other two tests were very high (although now they are normal).

    You may do great with it and many people do but I did not tolerate Gastrocrom/Cromolyn at all and tried for many months and it cost me a fortune. The mast cell stabilizer that worked for me was Ketotefin and I still take it today. Am only mentioning this as another option. In the U.S. it can only be gotten at a compounding pharmacy but I think it is easier to get in other countries.

    This also seems strange to me. I do not have Lyme but many patients have the Lyme/MCAS combination and I believe it is fairly common.

    Best wishes to you and am so glad you found a doctor to evaluate you! Keep us posted!
     
    ahmo, antherder, justy and 3 others like this.
  5. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    Thanks @Allyb510 for sharing your experience.

    I saw Dr Clive Grattan, dermatologist masto specialist with knowledge of MCAS, in London and had a similar result. Testing for typtase, urinary n-methylhistamine & IgE panel. Prescriptions for anti-histamine, anti-leukotriene and sodium cromoglycate, regardless of test results. Haven't had a follow up yet but would assume something like ketotifen might be added in future.

    He was generous with his time and indulged many contentious questions I had on MCAS. He certainly gave the impression of awareness & competency in the area. He was also willing to test for PGD2 but advised against it in my case due to the cost of shipping a bucket of frozen pee across the atlantic (my words, not his :D). I'm not experiencing full on anaphylaxis so even if MCAS was confirmed I doubt the hard diagnosis would lead to any more 'experimental' prescriptions.

    I follow a UK Facebook MCAS group along with several others from PR. Croom, Grattan and Seneviratne seem to be the big players, Bethan Myers in Leicester gets a mention for paediatrics, Vic Khullar for urology cases. I'm aware of some severe patients getting Omalizumab (Xolair) but beyond the stuff I mentioned in my first paragraph I don't think we have much else available to us in the UK.

    @Plum, Dr Grattan was £300 for 1hr appointment. Tryptase, n-methylhistamine & IgE panels were in the order of about £600. The PGD2 alone is a further £700ish I think. I was lucky and managed to strong-arm my very basic Beneden health care to cover it on the premise that none of their doctors knew anything about MCAS!

    Edit - meant to say that Dr G was prepared to prescribe the basics listed in first paragraph without testing as he felt response to those was a much better indicator than notoriously unreliable tests - I had the tests only because I had someone else picking up the tab.
     
    justy, Allyb510, ukxmrv and 1 other person like this.
  6. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland

    Hi @keenly . Yes, I had to jump through hoops to get Dr. Croom's name! I don't understand the secrecy around MCAS.
    Dr. Seneviratne has an illustrious background, doesn't he? I will make a note of his name in case Dr. Croom doesn't work out. Are you thinking you might give him a go, or Dr. Croom?
     
  7. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    Of course @Plum . The combined cost for the appointment and test was £416. Dr. Croom's charge alone was £400, so the tryptase turned out to be a nominal amount. Since I was travelling a long way, I wish I could have had the full workup and been done with it, but oh well...
     
    Plum likes this.
  8. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    Aw thanks. I've got to keep these rogue mast cells in line!
     
    justy and Plum like this.
  9. Plum

    Plum Senior Member

    Messages:
    451
    Likes:
    319
    UK
    @Allyb510 a few years ago I looked into compounding pharmacies here in the UK and I didn't find any for meds like ours. If I remember correctly there are some that do compounded HRT.... I did ask a pharmacist about 10 years ago about compounding and for something really cheap they quoted over £100.
     
    justy and Allyb510 like this.
  10. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    Forgive me @ryan31337 but I'm going to have to say "OMG", are you joking? That testing is pricey! But brilliant you managed to get your insurance to cover. Interesting the doctor says many tests for MCAS are unreliable. Is there such a thing as a reliable test to diagnose any condition, I wonder? Lyme testing is unreliable too...

    I take it that Prostaglandin D2 will be different than the serum Prostaglandin E2 test I had recently which came back high? I must research this. Do you experience anaphylactoid reactions but not full ana? I do and I won't try anything related to something that has given me a bad reaction. For instance, statins, although I've heard they're all different and some can be tolerated better than others. I think because my mast disease is not very well controlled and I don't have any emergency measures in place...

    Well, Dr. Grattan sounds quite knowledgeable and thorough. It seems you might have got more bang for your buck from him. Why didn't Dr. Croom suggest an anti-leukotriene for me? I must investigate. Very good to know about Dr. Grattan for the future, should Dr. Croom get out of line.

    I also joined a Facebook MCAS group but haven't been on much yet. Folks from PR were the ones to recognise MCAS in me, which was brilliant.
     
    justy likes this.
  11. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    You would be broke but at least not reacting...:) We need a reasonable compound pharmacy...let's get militant!
     
    Plum likes this.
  12. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    I meant to ask if anyone has tried Daosin or NeuroProtek? I'm very tempted but do I dare...
     
    Plum likes this.
  13. Plum

    Plum Senior Member

    Messages:
    451
    Likes:
    319
    UK
    I dare ya! (not really but we gotta try things.... sometimes). It depends on how bad you react....

    I reacted to Neuroprotek - systemically. Have since found out I am allergic to polyphenols.

    Daosin is sitting downstairs..... but I'm scared of the additives!

    I wish there was a compounding pharmacy but we are too few in number.... maybe in 50 years time :)
     
    Allyb510 likes this.
  14. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,310
    Likes:
    12,094
    U.K
    There are NO compounding pharmacies in the UK apart from one that does bio identical hormones. Its a real pain because Ketotifen helps me, but I also react to it whenever I try and increase the dose, and I can take some antihistamine brands but not others...

    I have an apt fro Dr Croom in June, but your experience has not filled me with hope - especially as I have a clinical Lyme dx and have terrible drug reactions, and am on keotifen and antihistamines already for some time...

    @ryan31337 - I got the impression from others that Dr Grattan was a bit hit and miss so thought Dr Croom would be a better fit. Dr S was top of my list but I hear he is VERY expensive and doesn't communicate well with GPs etc.

    If I still get no joy we may head over to MN in a year or two and see of Dr Croom might work with Dr Afrin. Im convinced MCAS is causing a lot of my symptoms, possibly even the fatigue and I don't feel secure in my Lyme dx as all testing was negative.
     
    Allyb510 and Plum like this.
  15. keenly

    keenly Senior Member

    Messages:
    559
    Likes:
    560
    UK
    :jaw-drop::jaw-drop:

    Apart from that I like the sound of the rest.
    £300 is cheaper than Prof Seneviratne.
     
    Allyb510 likes this.
  16. keenly

    keenly Senior Member

    Messages:
    559
    Likes:
    560
    UK
    It is a shame Daosin is full of crap. Completely unnecessary to add titanium dioxide, sucrose etc.
     
    Allyb510 and Plum like this.
  17. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    Well, Neuroprotek do a low phenol version. I ordered it from Amazon but when it came the main label on the bottle did not say Low Phenol like the photograph on the listing did and, as people were complaining about having received the wrong thing, I now want to return it!

    How did it make you feel exactly?

    I know what you mean about the Daosin but I was reading about people on PR who have had good results with it. Don't know if I should risk it...Apparently you can get diamine oxidase from pea seedlings so better get my gardening gloves on...

    Yes, there's bound to be plenty of other poor sods out there who are reacting and wondering how they can tolerate meds. We need to start a compounding pharmacy...my nephew has a masters degree in the subject so maybe I can get him on board ;) !
     
    Plum likes this.
  18. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    I know. Why do they do that? I thought Dr. Joneja was trying to do a pure, vegan product from pea shoots, but don't know how long that project will take to get off the ground.
     
    Plum likes this.
  19. Allyb510

    Allyb510 Senior Member

    Messages:
    181
    Likes:
    233
    Scotland
    How much was Prof Seneviratne? Do they think we're all made of money?
     
  20. Plum

    Plum Senior Member

    Messages:
    451
    Likes:
    319
    UK
    I never trust supplements off Amazon. I'm never sure of who's selling them.....

    It gave me a migraine, I felt drunk, dizzy, disorientated, stomach pain, nausea and diarrhoea.....

    I think there's a facebook group for pea seedlings for DAO. Apparently growing them in the dark produces more DAO...

    I like gardening but now doing it in the dark requires space I don't have.

    I never understand the need for the additives that are put in pills... like dyes. Does my body really care if the pill is off white or a pretty red?!
     
    Jigsaw and Allyb510 like this.

See more popular forum discussions.

Share This Page