Helpful Posts for the Newly Diagnosed.


My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness - composed over several long months.

A mantra for living with chronic illness.

Dysautonomia: What you need to know in 5mins or less.

5 tips for the newly diagnosed patient.

Changes

16 points to consider when reading medical research.

11 tips for talking to your children about your illness.

Everybody needs a team

Acceptance is NOT giving up.

Unexpected blessings





2 comments:

  1. Quick question, although it may not be as quick to answer :)
    I just wanted to know what your process was for getting diagnosed with dysautonomia? I'm not 'officially' diagnosed yet, but the dr has a strong suspicion that that is what it is, though there's a couple more tests until he is satisfied. I'm just curious what your experience was - what tests confirm the diagnosis? Surprisingly (for me) accepting the diagnosis is tricky after so long being told it was all in my head, or suspecting other more sinister things (I basically developed health anxiety over the past 2-3 years - constantly googling non-specific symptoms and coming up with the henny-penny answers you generally get when you do this), but if it's dysautonomia, great!! It's not great that it's that, but at least it's something! I guess after all this time, accepting something with non-specific symptoms is tricky - even trickier is that there's no quick and easy treatment (darn!) or set list of what to expect. Reading through one of your posts (not sure which) where you talked about crushing chest pain, shortness of breath etc etc, I get mild versions of these. I guess my whole 'dysautonomia' is relatively mild (thank gosh) in regards to what I've read is possible - I am constantly dizzy, foggy and fatigued with occasional pre-syncope (I have only passed out once or twice and usually with a cause - pain or standing in a hot stuffy room too long). I sleep like crap and sweat often during the night, plus get wierd 'flushing' type feelings, shortness of breath, low BP, weakness, but nothing so excessive I cannot get out of bed. I can still exercise, though I am fairly unfit, so I'm working on this too. I have other non-medicinal therapies I'm going to try before I'll go on the fludricortisone the dr is suggesting - I would prefer not to be medicated if at all possible, especially given the mild dose I seem to have. (I also get migraines, so have been advised I am at a high-er risk of stroke, so I don't particularly want to get a higher-BP and increase this risk, if it's avoidable.)

    Well, that ended up being a lot longer than planned, but if you could fill me in on your process of diagnosis, or what the 'usual' factors are that allude to a diagnosis of dysautonomia (or a link to a post in which you already discuss this so you don't have to regurgitate facts) that would be absolutely fantastic.

    On a lighter note, I'm so glad I've found your blog. Me and Bob might only just be getting properly acquainted, but he's been haunting me for some time and as much as I'm sure he's great if you just get to know him, I'd rather do whatever I can to keep it to a casual acquaintance. :)

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    Replies
    1. Hi Unknown. It was a long process of exclusion for me. You have to rule out a heap of other causes (DINET have a good list to go through) and then it was the usual heart tests like ECG, ultrasounds, and stress tests to rule out a direct cardiac cause. Then a Tilt Table Test by an electrophysiologist. I also did autonomic testing (which can be hard to get) where they do things like valsalva and QSART (a sudomotor test looking at sweating) all while strapped up for constant hr and bp monitoring. I also did nerve biospies and EMG and the like looking at neuropathy which can also be a cause. It can really all depend on your presenting symptoms and what's available in your area and what your doctors preferences are. I think this is the latest consensus paper on things like POTS and NCS. http://www.hrsonline.org/content/download/24353/1071535/file/2015%20HRS%20doc%20on%20POTSISTVVS.pdf

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