Welcome to Part 4 of the allergy to life side quest chronicles! Lucy vs The Leak continues to be on hold while I tell this horror story I found myself the main character of!
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“, “Nobody more monstrous than me” and “Burned but not buried” then you 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!
Reaching the pinnacle …
I finished the final post with the promise (for a 3rd time) of a zoom meeting the same evening. I’m starting this post with the moment this meeting began!
I know, I’m in as much shock as you, but maybe 3rd time lucky?
The meeting began with some (non-reciprocated) over the top pleasantries from him before asking me to explain what has been going on. I mean this just added to my opinion that he wasn’t reading any of the information provided through the weekly check-ins or daily symptom logs.
Anyway, I explained again about the respiratory symptoms that kicked in 48 hours after my myelogram procedure. I also emphasised the tightness within my throat. Although was so visibly short of breath, whistling and wheezing every other word, surely not even he could be blind to that …
Apparently he could!
Stage 1 audacity …
The first words out of his mouth were:
“I think we should pay to get a chest x-ray …”
Absolutely not. After rinsing me of £1,500 already, I could categorically state neither dad nor I would be paying for a chest x-ray! I also added in that I didn’t think a chest x-ray would show any abnormalities because the difficulties are with the base of my throat and upper airways; not my lungs. Believe me, as a lifelong asthmatic, I know the difference!
Stage 2 audacity …
Having shut down that situation, he proceeded to confirm my symptoms are most certainly a delayed mast cell response to the contrast used in my myelogram. The audacity! I mean how can you state something with such confidence knowing you advised of no precautionary measures to prevent this happening?!
Apparently he didn’t have such a conscience …
Whilst I appreciate there may still be a chance of a reaction even with the pre-medication programme, the fact he never informed me of this as the specialist responsible for my MCAS is a failure of care on his part!
Keen to move on from yet another reminder of his incompetence, I began asking questions around how we relieve the symptoms I was left dealing with in this precise moment. Stupidly, I remained hopeful to be on the receiving end of some sort of proactive medical input. Instead, every question I posed continued to be not explicitly answered or deflected entirely.
Again, allow me to point out that his website states “Specialist doctor-led care from expert physicians specialising in complex chronic conditions” and “proven results specialising in MCAS.” I’ll leave that there for your own interpretation because I’m not sure how to scribe the facial expressions I am currently pulling!
I really was getting nowhere fast. I even asked if I should have an Epi-Pen given the guidance from Mast Cell charities, but shock horror (not), that question (like most of the others) hung in the air like tumbleweed and never received an answer.
Stage 3 audacity …
Frustrations rising quicker than my breathing difficulties, I threw the blood results at him asking what they meant and why they were raised. Despite stating in his email (**yes I am coming with receipts) they needed a proper clinical discussion rather than a message, we clearly were not on the same page about what this meant.
He stated:
“There is likely inflammation at the top of my airways.”
I mean really? Talk about not only insulting my intelligence, but also clearly highlighting the lack of attention paid to any communication made on my behalf as this had been identified 2 weeks go now. I didn’t need him to state the obvious. I needed him to provide the strategies for reducing the inflammation.
So why did his email state my blood results combined with my symptoms required a proper clinical discussion I hear you ask … I did not, and still do not know!
Audacity quota reached …
Think that is bad? This was the next series of sentences to leave his mouth …
“Have you been back to the doctor who performed the procedure? Really neurology should be the ones dealing with it because they are the ones that caused it. They performed the procedure, so the responsibility is on them. If they won’t do anything then I will write them a strongly worded letter.“
I mean … I was speechless …
Firstly, I hadn’t been back to the neurology at the point of this call, but I knew what their response would be. Having been a neurology patient for 12 years now, I knew for a fact their response would be something along the lines of “your symptoms are not neurological, so we can’t do anything about it them.”
**I can confirm having later emailed to prove a point that the response I received from my neurologist stated he does not have the specialism or the knowledge to treat an MCAS related reaction.
Secondly, this doctor advertises himself on his website and across social media as being “an expert in complex chronic conditions” which includes MCAS by name. Therefore, it is not unreasonable to assume that being an expert means managing the condition and not just recognising symptoms and writing a prescription for medications. After all, I’d done half of that in terms of recognising the symptoms, so realistically all he did was write the prescription!
Self-proclaimed expert …
I appreciate he may not have been familiar with the CT Myelogram procedure I underwent, but at this point the procedure itself was irrelevant. He categorically without any doubt or hesitation confirmed the symptoms I was experiencing to be an MCAS reaction.
Therefore, as the expert able to diagnose the condition, write prescriptions to medicate the condition, and seemingly recognise a flare up of the condition, I could not and still cannot understand why he was shocked that I had the expectation he would be able to manage the flare up! If this is something he is not capable of doing, I’d go as far to say he is not only misleading people but even falsely advertising himself.
Confirming I was experiencing a mast cell reaction, part of the condition he was responsible for diagnosing, but not being able to offer any medical advice on how to alleviate it, most definitely leaves questions as to whether he is the expert he claims to be.
Now, as a long term patient, I can appreciate even within a specialty there will be niches where you require a more senior specialist. However, despite the fact he had done nothing to try and relieve my symptoms, if it were the case I required input from somebody else then he still had a duty of care to pass me on to somebody appropriate qualified. Although at this point I’d take somebody actually qualified!
Is it clear any ounce of the empath in me had been squeezed out by this point?!
As for his comment on writing a strongly worded letter, I paid him £1,500 to medically manage my symptoms; not as a secretary to write letters!
Thinking it couldn’t get worse …
Telling him neurology would not be able to help seemed like a lost cause. Instead, I returned the focus of the call to the immediate issue. My respiratory difficulties.
Over the years, I’ve learned there are two types of doctor:
- The ones who welcomes your understanding of your symptoms you actively experience.
- The ones whose ego cannot handle you having an understanding of the medical world.
No prizes for guessing which category this doctor falls into …
Nonetheless, I stated there must be rescue medications to take during a flare up/reaction. His response was simply “yes, prednisolone.” This was great, but I’d had 2 full courses of prednisolone with no benefit.
What next? There must be alternative, stronger intervention strategies if the first line treatment fails. I mean, if somebody is having an asthma attack and the blue inhaler does not suffice then a nebuliser is used. They are not just left to suck it up!
I imagine by this point, wrong though it may be, it won’t come as a surprise to hear he again deflected my question.
Over it now …
By this stage, I’d been ignore more times than a primary school teacher at Christmas, so it was time to be pull a 180. I asked him very bluntly if he’s telling me that it is a case of the steroids have not worked, so now I just have to suffer and ride it out indefinitely.
He didn’t like this and became very defensive. Apparently it is not the case of suffer and ride it out, but I supposedly wasn’t worthy of any further expansion.
Instead, apparently my only option was to pay to see an immunologist privately. I feel you need to go back and re-read that sentence with a pause at the word pay. This was red rag to a bull in my dad’s eyes. I mean what exactly had I paid this guy £1,500 for beyond writing one prescription and a bunch of seemingly AI generated weekly check-in responses.
Without wanting to risk repeating myself too much, I still cannot fathom how you can have the audacity to call yourself an expert in a condition, but have not even an inkling on how to treat a flare up.
Enter dad to the call …
My dad, who had been actively listening off screen, couldn’t bite his tongue any longer. All of a sudden, my situation became deemed too complex and was requiring the administration of biologic injections.
Too complex for a specialist in complex chronic conditions? That’s gotta be worthy of a spot on my CV! Although, based on how the call had gone so far, I’d say this was more a deflection than a genuine belief. What he wasn’t banking on however, was that fact I already knew what the injections are and why they are used! If I didn’t know better, I’d say he was actively trying to get rid of me as a patient …
Back to dad …
After pointing out his skepticism around his competence upon being told I had found him on TikTok (my dad is completely anti social media), he went on to highlight his skepticism is proving to be right as the punchline!
Clearly taking offence, he stated he could not pay for this apparently now necessary appointment with an immunologist. However, as a gesture of good will (laugh, please laugh), was prepared to refund the cost of the immunologist out of his 8-week programme and cut it short.
As I said, actively wanting rid of me …
It didn’t end there …
All of this manly energy was lovely, but non of the words being shared even hinted at solving the main issue at hand. My immediate and now prolonged respiratory problems. Even a private immunologist could take months for an initial appointment if they are any good at their job!
If this was the only option available to me, I wasn’t about to make the mistake of paying for the wrong specialist twice! Therefore, I asked who it is I should be going to see.
Surprise, surprise (not) … he didn’t know!
I rephrased the question to ask which consultant immunologists he would recommend. After all, as an expert working within the specialism he must know who the decent consultants are …
Again, he was clueless …
Here’s the thing though. His website actively advertises an “Integrated MDT approach” as “coming soon.” This approach states involvement of multiple specialists including immunology and allergy. Whilst I appreciate it is not currently in place, to be able to actively advertise it on his website as coming soon means he must have a knowledge of which immunologists and allergists are going to be a part of the MDT approach. Therefore, claiming to have no knowledge of any immunologists when I asked wasn’t exactly a truthful response!
Now, one may argue he didn’t want to lose business (questionable argument to make), I will counteract that argument with the following … He is a medical professional with a duty of care to his patients. If, and it is completely hypothetical of course, he has chosen to prioritise profiteering over my health then make my words this won’t be the last of it!
Exit meeting …
There wasn’t much left to say after that. To be fair, I didn’t have much lung capacity left to say anything anyway. I continued to become increasingly breathless and he was clearly not prepared to help me.
Alarmingly, this isn’t the final part of this series. There is somehow more to come, but for now I need a swig of antihistamine and a nap!
Come back very soon for part 5 of seeing a TikTok doctor so you don’t have to!
May your symptoms always be believed,
Your favourite headache x
Discover more from Not just a headache, honey
Subscribe to get the latest posts sent to your email.