Autonomic Dysfunction: This is aimed at the gurus... - LUPUS UK


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Autonomic Dysfunction


This is aimed at the gurus that know all about autonomic dysfunction.

I had my appointment today. I mentioned the right side face numbness (among other things). He said it seems to be that my main problem is autonomic dysfuncfion. He's organised a tilt table test and an MRI/MRA. Also a lot of adrenal tests and other blood tests to check hydration levels.

So what can anyone tell me about autonomic dysfunction? I know the basics of how it works etc but how many of my symptoms should I attribute to this problem? He seems to have abandoned the idea of lupus for now (again!!!!!!!)

6 Replies

Hello: thanks v much for this update

Am glad your consultant is taking you seriously. Those are amongst the tests to be ordered in cases of dysautonomia (aka autonomic dysfunction).

The best places I know for solid info on these subjects are STARS (this organisation has a HU forum) the Syncope org:

Here is the link to their info on PoTS:

Also, are you hypermobile? Because this website is good on the way hypermobility & dysautonomia overlap. Here is the link to their autonomic system info:

My version of dysautonomia includes the usual signs & symptoms (these websites list them) but I doubt I'd fulfill diagnostic criteria for full blown PoTS, although I have vascular ehlers danlos hypermobility. So far anaesthesiologists are most interested in & wary of my dysautonomia signs + symptons, diligently taking all this into account during procedures & ops

Am sure you'll get some great replies...meanwhile I hope something in all that is useful

Hope you'll let us know how these investigations go

🍀🍀🍀🍀 coco

I find this site pretty good for explanations

and if you keep plugging through it it lists symptoms and stuff.

But it is the outcome of an underlying cause - and there are a lot. But for many of them the only answer is treating the symptoms.

Hi. In addition to the links that Barnclown has provided, you may want to check out the UK charity POTSUK:

Whilst this is called POTS, it also addresses other forms of autonomic dysfunction (AD). I have neurally mediated hypotension and have most of the symptoms of POTS (bar the raised heart rate; instead my blood pressure can plummet on standing and on standing very still for any length of time). The site also provides very useful information about measures that can be taken, both pharmacological and otherwise, to help yourself. For me, drinking 2.5 litres of water per day, raising the head of my bed, and wearing grade II thigh length compression stockings have been key to improving matters a bit.

AD is still very much an emerging area but it is currently known that a number of things can cause it. Including being a secondary condition to illnesses such as Lupus and Antiphospholipid Syndrome. So it may be that you do have Lupus. Plus a form of AD.

Having a diagnosis of AD is helpful as, whilst in my experience many GPs know little or nothing about it, your specialist (rheumy presumably?) seems to and should be able to help you access drugs, stockings, other on the NHS. It is also important to know if you have to have a general anaesthetic - your anaesthetist would need to keep you intravenously hydrated prior to any procedure, etc.

Hope this is of some help.

Wow!🤗Thanks Barnclown PMRpro and MrsMouseSJ for the links. I never realised how much ANS/POTS actually involved as far as symptoms go! I've suspected for a while that I have POTS (you can see previous posts of mine about it). It's only since I mentioned the numbness that the doc has really got serious about it.

The list of symptoms in one of the videos in the first link you gave me Barnclown pretty much entails my full package of symptoms (apart from the newly emerging photosensitivity, it's about the only one that can't fit under this umbrella!)

There's a lot to think about. I'll keep you updated on how the tests go.

MrsMouseSJ in reply to 1985mum

If you are now photosensitive then this would, as I am sure you very well know, be another pointer towards there also being Lupus. Certainly, I hope there is a full and proper consideration of its potential presence in your case. Good wishes.

1985mum in reply to MrsMouseSJ

Yes that's what I am thinking too!

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