Dysautonomia (Autonomic Dysfunction) Community
New Dx Pandysautonomia
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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New Dx Pandysautonomia

Hi, I recently saw a neurologist who said I have pandysautonomia.  He also said there are tests to see if this is autoimmune or idiopathic, but that we can't do the tests in New Zealand.  My question is:  What do autonomic tests include?  Are they blood tests?  How long do they take?  I am thinking of finding somewhere overseas but I need to know if the tests are worth doing?  Of course, I am keen to find a way to treat what is happening to me.  I have a life and I want it back!

Er, my brief history...
...since 11, I've been a fainter.  Probs with vomiting and abdo pain all through adolescence... then two difficult and dizzy/ nauseous pregnancies in my early thirties before a bout of flu. Three years ago after asystole on the TTT I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome).  At this time I was seeing a cardiologist. I was fitted with a rate drop pacemaker to help prevent neurocardiogenic syncope.  I continue to suffer with dizziness and fatigue, my blood pressure can be both very high and very low.  I was treated with Fludrocortisone (which increased my intraocular eye pressure to unhappy levels) and then after that, Midodrine.  Midodrine was wonderful (felt better than I had in years!) but quickly created problems with high blood pressure.  I am currently on no medication.
Since my initial diagnosis I have developed problems with my stomach, bowel and bladder.  When I eat my stomach distends painfully and we have not found a sensible solution for that. If I need to go out anywhere, I just don't eat until I am home. I have problems with incontinence (urinary and faecal) as well as retention with both.  In urodynamic testing my detrusor muscle showed little movement.  I am managing with intermittent self-catheterisation and movicol.  I have changed my diet to gluten and dairy free with no noticable effect.  
I have some evidence of focal spasm, and a permanent visual disturbance in my right eye, but otherwise all of my physical neurology exam was normal.  I have sporadic problems with sweating and find heat very hard to tolerate. My pupillary reflexes are normal. I have extreme fatigue and some days find it difficult to get going.

Does this sound like pandysautonomia to you guys?   What should I do?  I need to change things, do something, get better.  I am desperate to find a solution.

Can you help me?
Rach
Tags: pandysautonomia or POTS
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875426_tn?1325532016
I wonder if you can't mail the tests to a lab somewhere if you are able to travel?  Seeing you mention pandysautonomia was the first time I'd seen the term.  I found a couple of articles (see PM).  
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875426_tn?1325532016
I wonder if you can't mail the tests to a lab somewhere if you are able to travel?  Seeing you mention pandysautonomia was the first time I'd seen the term.  I found a couple of articles (see PM).  
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3712143_tn?1347939865
Thank you for the articles, the Mayo clinic testing diagram was fantastic.  It would be great to just send my blood to a clinic somewhere instead of taking myself!  I continue to explore the possibilities.... hoping that we can find some information about an autonomic testing facility I saw mention of on an EDS forum... they just said autonomic testing was available in Brisbane (which is not impossibly far from me here in Auckland) but no details.  I have put out some feelers and I am hoping to find out more today.  Thanks so much for responding to my question 'LivinginHope'... your tag is a good one!
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875426_tn?1325532016
Wow- I'm so glad you found something not so far away as the U.S.A. (or England) that's a possibility!  You're welcome & thanks for the kind words!  I hope you are not iron deficient besides all your other medical issues?  It's a common problem, an internist once told me, with the menstruating female.  And you can become iron deficient before it every shows in your complete blood count (it happened to me).  This problem can exacerbate your tachycardia and your fatigue, etc., so if you haven't had an iron panel (with ferritin, iron saturation percentage, T.I.B.C. and blood iron level) you might ask your doctor for that kind of blood testing.

Does your stomach empty slowly?
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3712143_tn?1347939865
Yes!  I distend within minutes of eating anything and then it can be hours before it all calms down, if it does.  Sometimes, if I eat again three or four hours after the last eating I can spend most of the day distended, even if I only have a few bites.  Generally it resolves overnight after a day like that, but not always.  This morning I didn't even eat anything but had to get out of bed quicker than my usual stage-by-stage routine... my tummy just blew up big without even food.  I wondered if there is a postural link?  I know when my tummy distends my dizziness increases.   Do you have this problem with your tummy too?
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875426_tn?1325532016
I don't have the slow emptying, though I've read there is medicine to speed motility out there.  Sometimes I do get painful gas in my stomach and have to take some simethicone though.  Have they checked your abdominal aorta since your dizziness increases with distention?
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875426_tn?1325532016
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3712143_tn?1347939865
Well that gives me hope!!
Thanks so much, wonderful to have this forum... more answers here than in most of the hours of searching I have been doing.  Thanks LivinginHope!!!

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875426_tn?1325532016
I hope you can get treatment that helps you with your complex medical issues!  It must be frustrating not living close to a place that knows better how to treat dysautonomia!  And you're welcome!
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Avatar_f_tn
Dear Rach,
Sorry to hear you've had a rough time with DYS, I have recently been dx with POTS and live on the Sunshine Coast, Qld. I am on a strict low FODMAP diet that helps immensly with the chronic IBS, it is a new diet from Sue Shepherd and I'm sure will help you. I have asked for the TTT at Brisbane Hospital, but their technician has left and there is quite a delay. In any case, it is not essential to diagnose the syndrome. The key is that dys is a syndrome often caused by other factors and although it is often difficult to find the cause, it may hold the key to successful treatment. So there is a list on dinet.org that may be worth looking at. I hope you find some answers xo
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