u/Immediate_Divide9446

UK based woman here, hoping someone can help.

Sorry in advance for the convoluted question. I started Montelukast around 6-8 weeks ago as I have suspected MCAS (Mast Cell Activation Syndrome) as well as asthma. It’s definitely helping my GI MCAS symptoms as well as swelling, and I’m not getting any worrying side effects. Wheezing when laying down is much better too.

Starting Montelukast coincided with the June heatwave and obviously pollen is high, and I started to get a bit of a chesty cough, croaky voice and increased mucus around the same time. Then coincidentally I was at the GP and asked for a new blue inhaler, but he wanted to switch me over to a MART inhaler so put me onto Bibecfo (generic Fostair I think?) with a spacer. The dose is 100/6 twice a day (up to 8 puffs if needed).

I was previously using turbohalers as I’m shockingly uncoordinated and can’t even manage an Easihaler without just breathing the powder straight onto my tongue. The new Easychamber spacer squeaks at me if I breathe the Bibecfo in too deeply or too fast so I’m not 100% sure if I’m getting enough. To not make the spacer whistle I don’t feel like I’m breathing in deeply enough, if that makes sense?

My chesty cough is getting worse and more mucusy and the inhaler doesn’t really seem to be helping; sometimes it goes back to just being a tickly cough for a few hours but then comes back.

My chest aches and feels a little bit tight. Peak flow is in the green although it does make me cough doing it. I can’t work out if:

The Montelukast is making my asthma worse, which seems odd as it’s helping everything else

The heatwave and pollen is making my asthma worse 

I have a bit of a chest infection

and/or I need a stronger/different medication inhaler/different type of inhaler (and maybe a different spacer)

Or some/all of the above?

I was very late diagnosed so am never sure what’s going on and what the problem/solution might be. I have (as yet untreated) late diagnosed ADHD too so find things difficult to unscramble in my head, so please excuse the slightly scribbly post. I can’t get a GP appointment today.

If anyone can give me any advice I’d be very grateful. ♥️

Hi, I’m UK based and am a part time wheelchair user. I can no longer self propel so was prescribed a power chair for the first time. I have an 18 month old R Healthcare Dash-e autofold folding electric wheelchair that was mostly paid for by an NHS voucher but I had to pay the rest plus pay for insurance and (my choice) extended warranty. As far as Wheelchair Services are concerned it’s my chair so I’m responsible for servicing etc. Batteries are not covered by the warranty and a spare is between £300-£400. Both chair and battery/charger came with minimal (badly translated) instructions.

It has a Lithium ion battery which was (and still is) advertised as having a 9 mile range. I’ve never needed to do 9 miles in one day, so it’s always lasted long enough on a full charge to do - for example - a National Trust property for 4 hours. I know in cold weather the battery loses charge much more quickly, which I think is normal. The joystick battery indicator has 5 lights to indicate charge and I know that speed affects how long the battery lasts.

In May on a cool day I used it to go for a “walk” round Christchurch Meadow in Oxford, back to the High Street, down to the end of the Westgate Centre etc, obviously switching it off every time I stopped. After 3 hours, the battery suddenly went from 3 bars to 2, and then shortly afterwards to 1, at which point I was worried I was going to be stranded, so turned round and made it back to my car (fortunately downhill) and just as I got there, the battery died.

I measured the distance I’d done on Google maps and it was only 3.3 miles on almost entirely flat terrain, some gravel but also smooth paving and indoors.

I had to cut my day short by a couple of hours, which was annoying but mainly I was relieved that I hadn’t got stranded far away from my car.

I contacted the retailer and told them what had happened, and that after only 16 months I would have expected the battery not to die after only 3.3 miles when it’s advertised as having a 9 mile distance. I think my particular chair may be being discontinued so when I emailed them, they were selling the chair with two batteries for the price of one.

The reply I got was that the advertised distance is dependent on terrain, temperature etc and cannot be guaranteed. I understand that but I would think I’d get 7-ish miles out of it on a cool May day, not just over 3. All they will do is get me a price for a spare battery.

Am I being unreasonable? This is my first powerchair so I don’t know what’s normal. I did read an article on maximising battery life and it did say to leave the battery on charge for a few hours after the green light came on, which I’ve done. To be fair, it hasn’t happened since so hopefully that’s helped, but a part of me is scared to take the chair too far from my car/house in case it happens again.

What would you do? (apologies for long post).

Pleased to say I’ve reached the beginning of the titration process with CareADHD, but because I have POTs and Inappropriate Sinus Tachycardia as well as being monitored by Moorfields for angle closure glaucoma, CareADHD understandably want more information, including an up-to-date ECG.

I’m overdue for my routine cardiology review by 13 months, and all they can tell me is that I’m still on the waiting list. I’ve had at least 3 ECGs at my GP surgery in the past, but when I asked if could book one, I was told no, because “the ADHD clinics do their own ECGs”.

When I replied saying that CareADHD via RTC is a virtual service so there’s no “clinic” I can go to, the surgery suggested going private. I’m disabled (spinal injuries as well as dysautonomia) and no longer able to work, so can’t afford to go private.

For those of you who had to provide an ECG, did your GP surgery do it?

Thank you ♥️

Ignore this if it’s already happened to you, but it might help someone. I’ve been feeling ill for a couple of months now, with headaches and really uncomfortable palpitations, fatigue and irritability. Then a week or so ago I began to feel as if I was coming down with flu or something, with joint pains, malaise, swollen glands and worst of all a severe pain at the back of my tongue as if there was a thorn or a shard of glass in it. Both ears were crusty, weeping and painful and I felt really tearful.

Had a GP appointment on Monday and she suggested comprehensive blood tests. By yesterday morning the mouth pain was so bad I got an urgent appointment and the GP looked in my mouth. She said I have the worst mouth ulcer she’s ever seen; a big crater hidden right at the back on the side of my tongue. Fortunately my blood tests had just come back and I was at the bottom end of low B12 and extremely deficient in Folate. She said that would explain all my symptoms and it was such a relief. I’d assumed it was just a bad MCAS and POTs flare.

That’s the trouble with chronic illnesses; I think sometimes we struggle on and assume it’s just a flare when actually there’s something more going on. So just a heads up.

In April I ordered my second Hidden Disabilities Sunflower card to add ADHD to my other hidden disabilities (POTs, MCAS, c-PTSD), because I find it helpful to wear, especially when out alone. The personalised ones are £11.50 + postage and there are quite a few boxes to fill in, as well as choosing different symbols.

I did the initial one ok, but this time I was having a particularly bad day and forgot to delete “Add your name here” and put my name in. I ticked “the card is for me” though, and obviously they had my full name and address. As well as that, they say they keep our data for 3 months.

The card took 3 weeks to come, and wouldn’t you know it, under my photo it says “Add your name here”. 🙄 I was so annoyed at myself, so emailed immediately and apologised, explaining I have ADHD and had missed that part of the form.

Nearly 2 weeks later, they’ve just replied and basically said “Tough. You should have double checked. We can’t reprint it.”

Is it me, or is that a bit of a shitty attitude from an organisation that is supposed to be helping people who have disabilities? It would probably cost them about £2 to reprint it but they want £15. Pffft.

ETA: Not me posting too quickly (thanks, impulsivity 😩) - I replied and had a polite moan, and they’ve refunded me for the wrong one so I can order again. 👍🏻).

Morning, having gone round in circles with the NHS for 18 months, Haematology have ruled out clonal/primary mast cell/mastycytosis and I *think* I have a diagnosis of suspected MCAS (checking later), I think my best bet is to book an initial appointment at Dickson’s MCAS clinic.

What I can’t seem to find out is whether they can/will prescribe sodium cromolyn? I’m already prescribed Ketotifen, Cetirizine (can’t take Fexafenodine), Famotidine and EpiPens on the NHS which is great and they’re all working pretty well. I can’t take Montelukast so have asthma inhalers for wheezing.

I’m still having regular flares though so would like to try Cromolyn and maybe hydroxizine for itching. I’m lucky that I have a GP with a special interest in MCAS but she doesn’t know the dosage for cromolyn or hydroxizine and immunology at Addenbrookes won’t tell her because “they don’t see people with MCAS because they don’t have the expertise to treat it 🙄.

Does anyone know if Dicksons will prescribe cromolyn and/or hydroxizine? I think my GP will be happy to try taking over the prescription on the NHS if she’s allowed but I definitely need someone to prescribe them initially.

Thank you in advance.

Hello, I suspect I’ve always had MCAS but it’s been worse since COVID, so after anaphylaxis + COVID in 2024 I have been seeing a Haematologist on the NHS. He’s ruled out primary/clonal Mastycytosis and suspects MCAS but has not categorically diagnosed me with MCAS because apparently the NHS still uses the older Consensus 1/Vienna criteria which I only meet 2/3 of because it’s basically impossible to get a blood test mid-flare (no walk-ins allowed where I live).

He has written to my GP and got them to prescribe EpiPens, Famotidine, Ketotifen and Cetirizine, but his knowledge of MCAS is very limited so he tried to refer me to Immunology twice (got rejected as they “don’t have the expertise to deal with MCAS”, Dermatology at Guys (rejected for exactly the same reason) and is seeing me next week but I think he’ll probably discharge me back to the GP.

GP has an interest in MCAS (and POTs/hypermobility/ADHD, all of which I have) and although she’s happy to prescribe me, she doesn’t know how to prescribe certain things like oral cromolyn, so did an Advice & Guidance to Immunology to ask them. They however won’t give her that info until I’ve been diagnosed with MCAS by the old Vienna criteria, rather than “Suspected MCAS” which I think is what’s on my notes. But until someone on the NHS actually diagnoses me with MCAS (which I clearly have), not only can I not try additional medication but also they won’t see me because they don’t see people with MCAS!

It’s been almost 18 months of being referred, being rejected “because MCAS” but not being given a firm diagnosis of MCAS so I’m just going round and round forever. NHS Clinics who previously saw MCAS patients (eg Clive Grattan at Guys) are now rejecting any referral that refers to MCAS.

Has anyone seen an NHS consultant recently who will actually diagnose MCAS using Consensus 2, or am I going to have to save up for a couple of years and see someone privately?
If so, anyone have any vaguely affordable recommendations?

F, 56 if that helps.