It’s your troubled hero back for season 6: Allergic to life

We’re putting Lucy vs The Leak on hold for a moment to take on a side quest specialty!

For those who are new here, hey! I’m Lucy. A 29-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon! Whilst I can think of greater things to be achieving in my 20s, if some good can come from yapping about my experiences then I suppose that’s a win!

Quick recap and backstory?

Back in my post “Connecting the clues: Plot line for Greys Anatomy S23,” I plotted the correlation between my mystery symptoms and the symptoms of a condition known as Mast Cell Activation Syndrome (MCAS). At that stage, everything was completely hypothetical. In fact, most people told me it was knocking on the doors of delusional.

Not one to be phased by the label delusional, I’d already armed myself with a box of over-the-counter fexofenadine. Also not one to shy away from pointing out when I’m right, you best believe the moment I woke up and wasn’t nauseous for the first time I told everyone.

The only problem was the NHS isn’t big on dealing with rare or complex conditions.

Unconventional or insane?

As expected, I hit a brick wall upon presenting my case to my GP. He was pleased the fexofenadine appeared to be easing the nausea, but in terms of MCAS and the NHS, it is pretty much a dead end.

In the words of Taylor Swift, I think I’ve seen this film before …

After a few days of contemplating, the following words left my mouth:

“I think I know who we need to see …”

Knowing was would follow, it only seemed fair to give my dad a quick disclaimer of:

“Now, I know how this is going to sound but please just humour me …“

Prepared? Because he definitely wasn’t:

“I’ve found this doctor on TikTok …”

As I said, he wasn’t prepared!

“He’s got like 300,000 followers on TikTok and has his own clinic for patients with EDS, MCAS and POTs …”

Quickly losing credibility …

There was a bit more back and forth, but for my credibility we’re going to skip that. Instead, let’s get to the stage where I pulled up the clinic website for this doctor.

Side note: for now, the doctor in question will remain nameless.

There were two options on the website:

1. MCAS pathway which totalled £299 for a 45 minute consultation.
2. Complex conditions pathway which totalled £475 for a 75 minute consultation and included MCAS, EDS and POTs.

Following a quick check of his GMC registration number, we opted for the complex conditions pathway as it appeared better value for money based on the information on the website.

Appointments were disappearing incredibly quickly, which I insisted must be a good sign, so we eventually managed to secure an appointment on the 10th March.

It is important to note … dad was still very sceptical …

3 months later …

My appointment time was 12pm which meant naturally dad got us to the clinic for 10:30ish. After a lot of waiting around, and even more moaning about waiting around, we made our way into the clinic for 11:45ish.

Like most doctors we see, he was late. Although, for £475, I expected better time management! Nonetheless, you bet dad set his watch the moment we went in to check the amount of time we got!

The consultation …

I retold the same story every other medical professional has heard including the widespread symptoms, the constant dismissal, my spinal leak saga (to date) and the incredible (in my opinion) response to the fexofenadine.

He seemed to be listening attentively which was something I suppose.

It is also very important to note he was told about, and acknowledged understanding of, my upcoming CT Myelogram procedure on the 30th March at The National Hospital for Neurology and Neurosurgery in London.

I didn’t have to tell him I was hypermobile because he pointed it out to me based on the way I was sitting. Again, another point to me because I was siting no differently to how I always have done, yet nobody else had ever noticed! I say point to me because naturally being the competitive people that we are dad and I were mentally keeping score on who made the correct call regarding this doctor!

Adamant he didn’t wish to see the full extent of my hypermobility, he quickly moved on to discussing my co-existing symptoms.

In his opinion, I was complex, but a more straightforward complex. I’m not sure if that’s a contradiction in itself, but I felt like I understood what he meant.

He then moved on to explain how the programme works.

The programme …

In summary, the programme would last 8 weeks, and during those 8 weeks several medications would be introduced. These included two different types of histamine blockers and a mast cell stabiliser. The fexofenadine would remain, but the dose would be increased to 3 times per day. I would also add in famotodine and Ketotifen twice a day. This would all be alongside the montelukast and inhalers I have taken for many years.

I would be responsible for logging my symptoms daily via an online platform as well as a completing an in-depth check in each Sunday. In addition, there would be access to instant urgent messaging which would be constantly monitored and responded to quickly should I encounter any problems, flare ups, or sudden symptom changes. Then, at the end of the 8 week programme, all the information would be passed over to my GP for them to take over my care.

After the consultation …

The consultation finished at 12:50, which considering it never started until 12:10ish, meant we never got close to the paid for 75 minutes. A point to dad in that ongoing tally we were keeping.

However, it felt like he listened, understood and had a clear idea on how to manage my symptoms and improve my quality of life. You see, that’s the problem when you’ve been dismissed and gaslit for so long, you blur the lines of desperation and cling onto hope that potentially isn’t really there.

By the time we arrived back home, I had received an email outlining the terms and conditions of the programme alongside the cost …

£1,500 …

Yeah, you can add another couple of tally marks to dad’s score card now. Actually, make it a handful because this £1,500 didn’t include the cost of the prescriptions themselves.

The problem was, so many allergy specialists had rejected my referrals due to being too complex. A recurrent problem in the NHS, not to mention the proposed new advice and guidance system due to come into effect in April.

I’ll be honest, even I felt likely dubious at this point, but £1,500 divided by the 8 weeks worked out at £187.50 a week. This sounded much better.

Desperate times lead to clouded judgements …

We agreed to accept the programme, but I am saving the rest for another day.

For now, all I will say for now is that gut feeling is there for a reason …

May your symptoms always be believed!

Your favourite headache (now with added allergy to life)! x