Note: Things have changed since I first wrote this post. Scroll to the bottom of the page to read my postscript.
At present, the cause of my Dysautonomia is not known. Dysautonomia is a dysregulation of the autonomic nervous system, so it can happen as a part of a number of primary diagnoses. In fact, having panDysautonomia as I do, without a primary cause, is very rare.
For example, people in later stage Multiple Sclerosis and Parkinson’s Disease can experience autonomic dysregulation. But there are other Primary Diagnoses that are known to cause Dysautonomia. Here is a list of them (see the yellow graphic below). It’s my list, so I have crossed out the ones that tests have shown not to be my own cause. It is not exhaustive, I haven’t included things that I know for certain don’t relate to my case. The uncrossed items are the causes yet to be fully explored by my doctors that I think are worth exploring. In some cases, they haven’t been crossed off because my pacemaker precludes me from having an MRI. These items are listed in blue. It is a long process trying to convince doctors that I need to know if my cause is treatable. If it isn’t, I will have to come to an acceptance. But I cannot do that until I know I have done my best. For me and for my family.
…and I want to post this little song here. It’s the last song I shared with Kellie and it is very special to me.
The brothers Finn, putting words to how I feel about this diagnostic search.
I won’t give in, ’cause everyone I love is here.
UPDATE: We now know that the cause of my Pandysautonomia is auto-immune!
I have had a positive response to my trial on IV pulse steroids which is a strong indicator of auto-immunity. This is fantastic news for us, because it means we have a treatment pathway (a few, in fact) and 20% chance of total remission.
It has been an incredibly long and arduous effort, looking for answers when at times I have been told by medical professionals that there are none. But for every dead end, there were many words of encouragement, nuggets of discovery, little gems of information dotting the way. If you feel at all like there is more to discover about the cause of your Dysautonomia, don’t settle until you know as much as you can. Things are changing all the time as research begins to piece the puzzle together.
Don’t give in.
I wish you all the strength you will need as you research and ask questions.
I recognise that I am one of the fortunate, to have discovered that the cause of my illness has a treatment pathway. Lucky, even. I also see that if I hadn’t been tenacious and kept trying to find answers, I would still be suffering under an incomplete diagnosis and not having treatment. Thank you INTERNET! Sick people just can’t spend hours upon hours in old-school libraries, but here on my bed, I’ve been able to research and read and discover and learn. My own research led me to finding doctors who could help me. I am so glad I kept looking for the information I needed.
I leave you with this thought from Thomas Jefferson:
“I am a great believer in luck, and I find the harder I work, the more I have of it”. :