What would you do?

I’ve been doing that thing patients do.


I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?

8 thoughts on “What would you do?”

  1. How bloody frustrating for you. Of course ‘those’ around you need you. You should be able to live a vibrant happy positive life like the Rach of old without all this crap. Tears here for sure. Kia kaha

  2. I am not sure what I would do in your situation. I had a condition as a teen that no one could define and I know my parents went to great lengths to find out what it was (which we did) and sought the best treatment for me. A friend of mine often says in relation to Drs that you need to keep going until you find one that will give you the answer you want…don’t give up Rachel – I am sure the answers are out there somewhere.

    1. So glad you and your parents found some solutions Priscilla. I think there are answers, for sure. I am not sure if we will find them in my lifetime but I’m not going to stop looking. Who knows where the answers will turn up? Under one of the stones I am turning, maybe? I’m a bit tired of doctors and the medical world in general. If this treatment doesn’t cast light on anything I might need to take a hiatus. It wears me out.
      Thanks for your encouragement Cilla. X

  3. I hope if it is autoimmune that you tolerate the immunosuppressants well unlike myself. I’m sure you will though. I seem to be special that way. Haha. Sigh.

    I know you get tired of people telling you what to do. So do I. But….;) have you heard of Dr Terry Wahls? She has MS which is AI and has reversed most of her symptoms using a diet that she came up after much scientific research. The reason I bring her up is that I’m nearly 100% certain she has actually reversed some of her nerve damage that MS caused. I know it’s a different cause etc but thought maybe could be helpful. Plus she all sciencey and not one bit woo woo. 😀

    Loves x

  4. Hey Rach, I have no idea what I would do in your shoes. Truthfully, I think I’d be a tanty queen.

    Seems searching for answers is the path of hope, which is a trait necessary for survival isn’t it?

    Keep searching my friend, and not just in the health realm xxx

  5. surely all these intelligent and driven people out there who become doctors don’t go to all that effort so that they can then tell their patients “I don’t know and you’ll have to be happy with that”… Keep searching, there must be a Doctor out there that became a Doctor just to solve mysteries like yours!

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