Railroaded

What happens when you feel railroaded at an appointment? 

With multiple chronic illnesses, some that have atypical presentations, the medical system becomes even trickier. 

In my opinion, appointments where I feel railroaded often include a change in diagnosis or medication, often from a physician I have just started seeing, who speaks in a condescending manner (whether intentional or not). In these appointments I often feel as though I have to fight for my voice to be heard. 

The vast majority of these appointments (as sad as it is to say) have been with male physicians when I have not had my husband present (or my dad in my earlier years). 

That's not what this post is about, but it is a factor worth mentioning. 

I had one of these appointments this week. 

Here's some background before I get into the specifics of the appointment: 

When I was 19 years old, my optometrist saw drusen building up in my eyes. Two years later, I had more of them, and they had grown, so he sent me to two separate ophthalmologists. Scans and pictures were taken, special tests were done at the hospital, and those two ophthalmologists sent those scans away to other ophthalmologists to consult. What I was diagnosed with was an early onset Age-Related Macular Degeneration (AMD). 

It was a shitty diagnosis, but one that was made with extreme caution and careful consideration. It was also a complicated one, because it is not supposed to happen in people under 65 years of age (as I was told then) unless it is a juvenile presentation called Stargardts, which mine was not. 

Since that time (nearly 16 years ago), I have been followed very closely, every six months by one ophthalmologist or another, along with regular optometry visits. During that time, my scans have been sent to a further 4-5 ophthalmologists - some out of province - just to consult. 

There is no concrete theory on the cause, apart from a potential connection to my complement system problems. It was agreed that while extremely strange, there has been no question about the clinical presentation of Macular Degeneration. 

This week I saw a new ophthalmologist, since my previous physician has lightened his patient load to focus on emergent cases only.

Before this new physician even sat down, his exact words were: "So you've been told you have Macular Degeneration?" in that seemingly condescending tone that I have heard before. Immediately my back is up and I respond with yes, and that multiple ophthalmologists have consulted on the case, including my previous specialist who is a managing partner of this clinic and who works in the same building. 

Despite my history, he instantly (and unilaterally) decided to change my diagnosis to something called Familial Drusen. It usually requires multiple family members to be afflicted (which is not the case), though, I have been told, can skip generations. It does not always cause vision changes, but mostly it resembles AMD.  

There are several things that upset me about this:

1. His arrogance in assuming he knows better than the various doctors I have been seeing. 

2. He actually said that, clinically, it looks and behaves like Macular Degeneration, and that if I were 50 years old (now that that the 65 year old marker has changed), that would be my diagnosis, but because I am 36, it is atypical. 

3. If there ever is a treatment for AMD, I may not be able to access that treatment because I will no longer have that diagnosis.

4. He very literally said it is a matter of "semantics" and "nomenclature" - by which I now assume that he meant that I am experiencing degeneration of the macula, but that he disagrees with the diagnosis of AMD specifically. 

5. He had only seen my scans from this week and from 2020, not my written history or scans from 2005. 

If he truly believed it was an entirely different disease, based on physical scans, something newly discovered about the disease, or even changes in the way my particular disease is behaving, then by all means I always want the correct diagnosis if it can be found. But that's not what he did, nor did he effectively explain his reasoning. I am not in the textbook expected age group, and he didn't like the wording, so he changed my entire diagnosis - which could cause issues in the future. 

I left the 10 minute appointment with him feeling utterly railroaded. It happened so quickly that I barely had time to collect my thoughts, let alone ask the right questions. 

I go into these appointments knowing that the physician is the expert so I defer to his knowledge... but after the fact, when I realize what all just happened, I feel helpless and a pit-gut feeling. 

So today I actually decided to call and speak with someone from his team, expressing my unease at how the appointment went. I explained that I did not understand exactly why the change was made apart from my age, that I have spent 15 years thinking one thing and now it is suddenly something else, and that I felt railroaded. I mentioned that I looked up the disease as he had asked me to and the criteria did not fit either - I would be atypical for someone with Familial Drusen as well. She asked me if I wanted him to call me back, and I explained that I would feel better if he consulted with my previous ophthalmologist first, since they work in the same building. 

I received a phone call back - and he said he had consulted with my previous physician, and said that that physician agreed with him that the diagnosis should be Familial Drusen. He also answered some of my questions, and he apologized when I said he seemed to dismiss my drusen as having no effect on my vision. He said that he "assumed" I was "asymptomatic", to which I replied that he had not asked, and that my vision has been distorted and worsening for years now. This, he would know if he had reviewed my history at all beyond the scans. Overall, he did address my concerns, he said he consulted with another ophthalmologist, one who I have great respect for, and he did seem to listen to my concerns. 

Then he reminded me that this is good news. 

If any of you reading this have chronic illness and have experienced appointments like this will know what a bullshit comment this is. I DO NOT WANT this disease - or any disease. What I want is the correct diagnosis - so forgive me for my skepticism in a doctor coming in brand new and not knowing my history in the slightest and changing my diagnosis after 15 years, while simultaneously dismissing my symptoms and ignoring my history. So yes, if this new diagnosis is correct, it IS good news. The prognosis is potentially better than full-blown Macular Degeneration. 

Then he also reminded me that he consulted with my previous physician to do his due diligence and not because I asked him to do so. 

It should feel like great news. 

It doesn't. 

I am still going to lose my vision, and now I am with an ophthalmologist that I am not sure I can fully trust, at least not yet. This means that I either ask to be seen by someone else, or I ensure to bring my husband with me to these appointments each time, or I pay an arm and a leg for genetic testing for both diseases so that we can know, for sure, that I do have Familial Drusen. 

In any event, I am stuck feeling confused, uneasy, anxious, skeptical, and railroaded. If this physician had gone about the appointment in a different way, even with a big diagnosis change, all of these negative feelings could have been entirely avoided. 

I am not a doctor. I care that this is another diagnosis that seems to be a question mark. Like I'm not quite on solid ground with this diagnosis either. 

Diagnosis whiplash over here. 

So frustrating. 

Perhaps genetic testing will give me that solid footing that I so often lack with my atypical presentations of not only diseases, but of experienced side effects and reactions to medications.