Welcome to Part 2 of the allergy to life side quest chronicles! For now, Lucy vs The Leak is remaining on hold because this whole experience is too bad to delay sharing with the world!
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!
If you haven’t read “It’s your troubled hero back for season 6,” then that is a must before doing anything else! If you want an insight on what MCAS is from a credible source, check out the Mast Cell Action charity!
A £1,500 programme …
The £1,500 had left my bank account and I was officially part of the 8 week MCAS programme. I’m not sure which was higher, my expectations or dad’s scepticism!
My treatment plan and initial prescription arrived 48 hours after paying and consisted of the following 3 steps:
| Step 1 – Fexofenadine | Step 2 – Famotidine | Step 3 – Ketotifen | |
| Days 1 and 2 | One tablet in the morning | One tablet in the morning | One 5ml dose in the evening |
| Days 3 and 4 | One tablet in the morning and evening | One tablet in the morning and evening | One 5ml dose in the morning and evening |
| Days 5 and 6+ | One tablet in the morning, lunchtime and evening |
The following warnings came attached:
- Fexofenadine – Do not take with fruit juice, especially orange, grapefruit or apple juice. These can stop the tablet from working properly.
- Ketotifen – This medication can make you feel quite sleepy. Most notably when you first start taking it, or when you add in the morning dose. This is normal and usually settles down after one or two weeks. Until you know how it affects you, please do not drive or operate any machinery.
Minus being slightly gutted my forklift truck driving career must be placed temporarily on hold, everything else was pretty straightforward.
The early stages …
Sceptic though he was, even dad found himself having to admit the benefits from the medication cocktail were quite remarkable! The increased dose of fexofenadine completely eradicated my nausea. I’m not really sure what the famotidine does, but it wasn’t causing any side effects. The real game changer though was the Ketotifen …
Keeping it real, the drowsiness warning was far too mild! I didn’t just feel drowsy, I felt as high as a kite! Realistically, it took at least 7 days for my body to adjust to the evening dose. Nonetheless, the moment I landed back on planet Earth, the improvements were insane.
For the first time in I don’t even know how long, I could walk without crippling pain in my hips, knees and ankles. The best thing was, the benefits didn’t end there! I also had no stomach pains after eating, finished a “normal” sized meal (as opposed to a child-sized portion), and the blotching on my skin was nowhere to be seen!
Unfortunately, the pain in my head, neck and spine remained untouched, but all these other improvements after the first week? Oh, I was totally proving the TikTok doctor was worth it …
Peaking too early? …
Now, I know I said Lucy vs The Leak was on temporary hold, but it is worth noting during week 3 I underwent my CT myelogram (a lumbar puncture with contrast) procedure at the National Hospital for Neurology and Neurosurgery. A procedure which this doctor was completely aware of beforehand.
Neuro discharged me 24 hours post procedure because minus a worsened headache (a temporary post procedure drawback), everything checked out. Plus, this was my 3rd myelogram so I knew all too well they can leave you feeling rough for days or even weeks afterwards!
48 hours later …
My head was killing me, I felt sick and my spine wasn’t exactly on top form. It was safe to day I was suffering, so when my chest started to feel tight it was more a case of welcome to the chat than this is concerning.
Over the following few days, I noticed my headache began to ease back towards the baseline level, but the chest tightness worsened. In the process, it also recruited a few additional symptoms in the form of: nausea, dizziness and throat irritation (or more specifically a feeling of narrowing).
Urgent message #1 …
Despite taking all of my medications (including inhalers), my breathing was worsening. Part of this £1,500 programme included access to an urgent messaging system which we were lead to believe would be constantly monitored and responded to urgently.
Unsure of what to do, I decided to send an urgent message. I explained the noticeable tightness in my chest alongside the narrowing sensation in my throat and this ned to try and take deep breaths to compensate; In spite of the notification confirming receipt of it, I never received a response to my message. I ended up in resus because of the same symptoms.
Weekly Check-in #3 …
As part of the programme, there was a requirement each Sunday to complete a detailed “check-in” form. This included detailing medications taken, benefits, symptom improvements, negatives, worsened symptoms and any other additional information you deem to be clinically relevant.
In light of the fact my urgent message continued to be ignored, I chose to use this check-in to detail my visit to resus alongside the persistent tightness in my chest and throat that appeared to be lingering. It was clear at this point that the urgent message wouldn’t be responded to.
I received the following response to my completed check-in:
The significant increase in chest and throat symptoms approximately 48 hours after the myelogram is very likely a mast cell mediated response to the procedure. CT myelograms involve intrathecal contrast injection and the physical stress of the procedure itself, both of which are recognised triggers for mast cell activation. A delayed onset around 48 hours is consistent with a mast cell flare rather than an immediate reaction, and the pattern you are describing fits this picture closely.
For the next few days, I want you to focus on settling the flare. Stay consistent with your medication timing, keep activity gentle, prioritise hydration, and avoid any known food triggers while your system is in this reactive state. The chest tightness and throat irritation in particular I want you to monitor closely. If the chest tightness worsens significantly, you develop any difficulty swallowing or breathing, or the throat irritation escalates rather than settling, please seek urgent medical assessment.
This was all a lot of waffle in my opinion. We will however highlight the want to monitor the chest tightness and throat irritation closely for reference later on.
Red flag #1 …
This next part is the final paragraph of the check in. It left me completely speechless, which for a girl who yaps a lot, is quite an achievement.
Going forward, it is important that before any future procedures involving contrast, anaesthetic agents, or intrathecal injection, your clinical team are aware of your MCAS diagnosis and that a pre-medication protocol with antihistamines is put in place beforehand. This significantly reduces the risk of a procedural flare.
My initial consultation with this doctor happened two weeks before my spinal procedure. It is documented by him in my initial consultation letter that I would be undergoing the spinal procedure at NHNN. He is managing my care and medicating me for MCAS. At no point did he mention a pre-medication protocol.
To say I was (and am) angry is an understatement. The fact a doctor, who advertises himself as a specialist in MCAS, can actively know their patient is undergoing a procedure likely to trigger an MCAS related reaction and not mention the pre-medication protocol must be a form of neglect.
Still hurting to breathe …
I think it is safe to say, pushing aside the questionable neglect, the above response didn’t offer any sort of medical advice. Not to mention the complete ignorance of having ended up in resus.
With dad’s scepticism higher than ever, I sent a second urgent message stating that I had to attend A&E because the chest tightness and throat irritation was severe. I also included that my HR averaged 149+, BP was up and down, was given IV fluids because my blood gases were not great and eventually discharged with oral steroids. However, at the point of messaging, I am on day 4 out of 5 of the steroids with no benefit. The top of my chest remains noticeably tight alongside the irritation at the base of my throat and I am still needing to take more really deep breaths to compensate.
It took 48 hours to receive the following reply:
Hi Lucy, can you please update me on this? How are you today?
Testing my limits …
The limits of my patience were being tested, but on the plus side, my half way through the programme zoom call was booked for the following day. In my head, this would give me chance to voice my concerns, and frustrations, almost face-to-face.
Even so, I sent the following reply almost immediately:
There has been no improvement in my symptoms described since my previous urgent message. My chest remains tight on a level I would consider concerning. The irritation in my throat also has not changed. I saw my GP as I was unsure on what to do. However, as my SATs were 98% and my chest is clear, he was stuck on what to do. As I am also becoming more out of breath with movement, he issued a further 5 days of oral steroids. I also am taking medications at the same times each day as recommended and drinking 2-3L of water a day to remain hydrated.
It took another 24 hours for him to respond.
Still no medical intervention …
It’s now 2 weeks since the spinal procedure and my mast cells did not show any signs of calming down. So, as someone with several other long-term conditions, I knew we were now too far along for everything to calm without medical intervention.
Even though the zoom meeting was scheduled for 14:00 that day, the following response came through to me:
Thank you for updating me and for being so thorough in tracking your symptoms. I want to address this carefully. First, the most important point. Persistent chest tightness that you yourself describe as concerning, worsening breathlessness on movement, and throat irritation are symptoms I take seriously regardless of a normal SAT reading.
I mean, you say it’s something you take seriously, but actions (and the lack of urgency to reply) suggest otherwise!
Yet more deflection …
He continued to say:
A 98% oxygen saturation tells us your lungs are transferring oxygen adequately at rest, but it does not rule out chest wall inflammation, mast cell mediated bronchospasm, or post procedural reactions.
On the clinical picture, the timeline here is important. Your CT myelogram was on 30th March and your chest and throat symptoms escalated significantly approximately 48 hours later. This is a recognised pattern in MCAS. Contrast agents used in myelography are a known mast cell trigger, and the procedure itself involves physical trauma to the spinal meninges which can provoke a systemic inflammatory and mast cell response.
This continued emphasis on the spinal procedure being likely to provoke a mast cell response after having had it done did nothing but anger me. He continued to say:
What I would like you to do is increase your ketotifen to three times daily temporarily if you are not already doing so.
Finally, a slither of medical advice. Although, I can’t understand the need to say if you are not already doing so. I mean, why would I increase a medication without medical instruction to do so?
He finished by requesting:
If symptoms are not improving within 48 hours or worsen at any point please contact me directly and we will consider a short course of prednisolone. Please keep me closely updated. I am monitoring this.
I think we’ve all gathered by this point he wasn’t monitoring anything. The giveaway clue here was the fact he states we will consider a short dose of prednisolone when I had told him on multiple occasions I have already had not one, but two doses of prednisolone (steroids).
So much more to come …
I am withholding the name of the doctor in question for now, but there is so much more to come. This part of the story is sadly just scratching the surface of the situation.
I wish I could say things improve and I spend my £1,500 well. I can’t, and it wasn’t. That gut feeling I mentioned at the end of part 1? I should have trusted it.
Come back very soon for part 3 of sharing my experience of a “TikTok famous” doctor so you don’t make the same mistake as me …
May your symptoms always be believed!
Your favourite headache x
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