I didn’t see that coming

As my diagnosis became harder and harder to figure out, they just ended up being more and more tests that had to be done  people have been asking so here we are this week. We're gonna review some of these tests. Give you an idea about what the experience is like so that you can go into it with more knowledge less fear and a bit more control over the situation.  And I really hope you don't have to have a lumber puncture. 

Every time you go to see your specialist, they're going to ask you how your vision is. It helps them a lot if you can say something more insightful, and more descriptive than "it's a little better", so today we're going to discuss how to describe the different elements and aspects of your sight in a more objective way so that you can give your doc some more interesting data that might help them diagnose you sooner and help you understand where you are in the course of your overall journey.

Today's episode is split into two parts. The first is a discussion about some of the long-term impacts of steroids that I've had - the kinds of things that accumulate in your body after you've been using them for many months. And the second part of the episode is a discussion with my beautiful friend Lucy, who will talk about her experience using steroids as part of a fertilization enhancement therapy so that she could become pregnant and have the beautiful baby she now has.  She offers a perspective on the steroid journey that I just can't have. I hope this adds a useful perspective for everybody. 

With optic neuritis or most other inflammatory diseases in your body, doctors will often prescribe some kind of steroids to get the inflammation to go down quickly and to start managing the condition. But steroids do not come without caveats. And most doctors probably think you will be off the steroids before any of these things start to manifest themselves. But they're probably wrong and so there's some stuff in this episode you need to know.    

The first medical team were circling the drain around a diagnosis that didn't fit the evidence. On top of that the diagnosis they were pursuing was cancer.  These two factors made me lunge for a second opinion.   This is the episode where we talk about the heroic folks in my new team who got to work fixing my vision - one symptom at a time. 

Christmas and new year in hospital wasn't exactly part of my optimal plans, but then again nor was optic neuritis. It was all worth doing in the search of a diagnosis and so in this episode, we talk about that experience and what came after in the quest for figuring out what was the cause so we could then fix it. 

This is the first of three episodes where we track the whole course from diagnosis to final treatment jump, jumping between a couple of hospitals and lots and lots of special specialists to find an answer. In this episode, we cover the initial diagnosis which fortunately turned out to be wrong and we discuss  how  to navigate the medical profession when it's not making its best judgments or decision decisions.   If you know anyone going through this, please pass this episode onto them. It could help a lot.  

We talk about what optic neuritis is, where it comes from what its possible causes. We also discuss some other advice about things that you should know from the outset and maybe some good habits you can develop from the beginning that will help you much much later on if the disease turns out to be not just a simple case.  

A brief introduction to the podcast and the two presenters: Brendan Bouffler (the patient) and Dr Joanna Gould (our captive scientist).