London consultants?

[GirlBrown]

Hi everyone,

I've just joined this group and I'm desperately searching for a doctor who can diagnose my suspected MCAS. My physiotherapist is an expert in HSD/hEDS, which I've been diagnosed with, and she pointed out that the gut symptoms, headaches and cramping/bone pain that I was experiencing daily all disappeared when I started taking antihistames for hayfever. I tested it by coming off them (all symptoms came back), and now I'm back on them again.

I still get the symptoms some days and I can still feel inflammation in my joints so I'd like to see someone to get a proper diagnosis and see what can be improved. AXA have approved a couple of consultations and basic testing but they don't have any allergists or immunologists on their books as you can't get allergies dealt with through private health insurance. The names they gave me to choose from don't seem to have any MCAS experience so I was wondering if anyone had any names they could give me for doctors that have managed to get a diagnosis from in or around London. The Mast Cell Action charity are unable to give out names any more due to privacy issues so I'm totally at a loss.

Thank you so much in advance!

[Winter_night]

Hi  GirlBrown - I am in the same situation as you… I have hEDS, PoTS, and fibro, and allergies labelled ‘idiopathic uticartia and angioedema’ that are worsening and looking more like the MCAS…. IBS, interstitial cystitis and bladder infections , rashes, hives, swelling…

I’ve joined an MCAS Facebook group but haven’t followed up any of the recommendations for private care that I’ve seen there yet. I have an NHS dermatology appointment this week regarding another autonomic condition that affects my skin and I’m going to see if I can bring up the issue of allergies and histamines there. I’ve seen advice on the Facebook page which discourages mentioning MCAS - due to its controversial/unclear status within NHS - and recommends describing the symptoms and triggers themselves and perhaps requesting an immunology referral.

[GirlBrown in reply to Winter_night]

Thanks so much for replying and for the sound advice. I think I'll go down that route with at my upcoming gastro appt and see if they can refer me on to immunology. Although saying that, I did recently have an NHS immunology appt for low white blood cell count where I mentioned to the doc that my gastro symptoms disappeared when on antihistamines and he as good as ignored me.

[Winter_night in reply to GirlBrown]

Hmmm sounds similar to what lots of others in our situation are saying. Apparently - and this is just anecdotal but I did hear it from a consultant - immunology has been flooded with covid long haulers and people with lesser forms of allergies and as a result there is a referral strategy in place which allows for only the most severe cases to get through. That’s not word for word, but you get the gist!!

Throughout my disgnostic ‘journey’ (Everest would be easier!) over the last couple of years, I’ve generally been told me bringing along photos has been very helpful (without the exception of one rheumatologist who was extremely dismissive) and so I’ve continued to photograph rashes, hives, swelling, puffy eyes etc. and I’m just banking them for the right conversation with a consultant who’ll listen. I don’t get breathing problems thankfully but clearly something is going on. ..

Let me know how you go with the gastro and I’ll let you know how dermatology goes. Good luck!

[GirlBrown in reply to Winter_night]

Good luck indeed, yes please keep me posted on the rest of your journey! It would be great to hear of a positive outcome.

[Winter_night in reply to GirlBrown]

Hi GirlBrown - I raised the issue of allergies as planned and showed some pictures and the dermatologist suggested a 4 week trial of montelukast which is an asthma drug used for calming mast cells. Having since read about how frequent mental health side affects are, I admit I’m a little nervous but I’m going to start low today (it’s taken at night) and I guess if it calms the reactions then it’s a clue… I didn’t mention MCAS just that I felt the reactions and my diagnosis of urticaria 10 years ago were linked to my hypermobility and PoTS. The consultant was very open to that. I haven’t had the clinic letter through yet but I think that’s sort of where we left it.

[DalesDweller in reply to Winter_night]

Thanks for sharing this, that reflects my recent experience with Nottingham Hospitals. My doctor was told they'd only only accept a referral based on all three the following criteria*:

• Systemic symptoms (involving a minimum of 2 organ systems)

• A response to treatment with antihistamine/mast cell stabilizer

• Elevated baseline serum tryptase

I think these are fairly standard, except the last one. Mast Cell Action told me that most people with a mast cell disorder don't test positive for this, and my own research suggests that only severe forms of disorder are typically detected with this test. So that would seem to line up with what you heard.

The good news, in my case, is that the hospital supporting my GP with advice and responding very quickly (within 48hrs!). I didn't have elevated baseline tryptase, so MCA recommended that a different test should be used to test for activated or elevated mast cells: 24-hr urine testing for N methyl histamine and Prostaglandins DM, D2 and F2a. Unfortunately, the GP is unable to order that test so I'm in limbo at the moment in terms of confirming a diagnosis.

Significantly though, thanks to the written advice from the specialist, the GP has been able to prescribe me Sodium Cromoglycate without a referral, and this is helping me. I would recommend those struggling to get a referral (and thus access to mast-cell stabilizer medication) to pursue this. My GP explained that national guidelines allow GPs to prescribe oral sodium cromoglycate, but that local prescribing guidelines at county level in my area prevented him prescribing it without a 'recommendation' from a specialist (also, nobody in the practice had ever prescribed this medication, so he was reluctant to prescribe without advice). The key point though is that this advice and prescribing recommendation were provided to the GP in writing without a referral. The GP probably won't think of this approach by themselves though, so you need to guide them as to what they need to write in the letter to the specialist.

*(I think these are broadly from pubmed.ncbi.nlm.nih.gov/335... but that's just my own deduction)

[Winter_night in reply to DalesDweller]

This is hugely helpful DalesDweller - thank you - I’m taking a screen shot of your advice right now!

[DalesDweller in reply to Winter_night]

So glad it was helpful, I know how long the journey can be. One other thing I'd say is that the GP took me more seriously when I could show them a supportive email from Mast Cell Action, so I'd say it's worth getting in touch with MCA if you didn't already.

[GirlBrown in reply to DalesDweller]

Thanks so much for your replies and advice @DalesDweller. Can I ask you what you mean by the supportive email that you got from MCA, and how you got it from them please?

[DalesDweller in reply to GirlBrown]

Really happy to help. You can contact them at [e-mail]

What I did was write MCA an email describing my symptoms and triggers (handy guide at mastcellaction.org/mcas-sym... and mastcellaction.org/mcas-tri.... I also put what interventions I'd tried, and how well they were working. I then asked specifically if they could offer advice to pass on to my GP to help me get a diagnosis and medication. They replied quickly.

At my next GP appointment, I discussed my symptoms again and showed how they lined up with those on the MCA website, and gave them a copy of my symptom and triggers list, and the email exchange with MCA. They then detailed my reported symptoms in a letter to the immunology consultant, who advised trying several antihistamines followed by sodium cromoglicate if needed (which it was for me because the antihistamines made me so lethargic, even the 'non-drowsy' one). I'm now slowly increasing sodium cromoglicate dosage. I think it worked well going in person with it on paper, but if you can't make it to the doctors they should be able to give you an email address so you can email it to the secretary to load onto the doctor's notes system in advance of the appointment.

Obviously everyone's circumstances are different, so this might not be how it plays out for you. In any case, I'm sure MCA will be there to support you.

One other tip I got from the MCA support group was to write an 'impact statement' about how your problems affect your life. I luckily didn't need to do this myself, but others were saying they got better support after they gave an impact statement to their GP in writing

[GirlBrown in reply to DalesDweller]

This is so incredibly helpful, thank you so much!! I really appreciate the time you've taken to write these replies, it's really kind of you.

[DalesDweller in reply to GirlBrown]

You're more than welcome. Good luck.

[Winter_night in reply to GirlBrown]

Hi GirlBrown , have you had any luck in progressing? I’m into week 3 of the Montelukast and I’ve not had any rashes, itching, hives or gastric issues. I think it has helped calm my cystitis too. It’s been put on repeat for me and I don’t intend to seek a referral to immunology as this seems to have had a good enough effect that I can just continue it long term.

[GirlBrown in reply to Winter_night]

Hi, that's great news about the Montelukast! I'm glad you've found something that's working so well for you. I've put my search on hold for now - I'm seeing Dr Gall for a POTS diagnosis in a couple of weeks and I read somewhere that he might prescribe for MCAS as well so all my fingers and toes are crossed that he'll be able to help me out with both conditions. I'll keep you posted!

[Winter_night in reply to GirlBrown]

That’s great you’re seeing Dr Gall… so many people speak highly of him on the PoTS Facebook page. I think if you have that diagnosis confirmed it can only help with other investigations as it’s all one big jigsaw. Good luck, will have my fingers crossed for you too.

[DalesDweller]

The charity Mast Cell Action mastcellaction.org maintains a list of UK doctors and clinics with experience diagnosing and treating mast cell disorders. Email them at [e-mail] (mastcellaction.org/contacti... and they will let you know the best people in your area to be referred to. They generally reply quickly and offer pretty amazing support for all things mast cell related.

[Winter_night in reply to DalesDweller]

Hi DalesDweller - unfortunately they’re not able to share those details anymore due to GDPR/data protection but they do still share lots of helpful info.

[DalesDweller in reply to Winter_night]

Oh that's a real shame, it was a great service. Wishing you luck in your search for the right people to help you find a road to recovery.