Addisons disease ...

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Addisons disease ...

Postby emmacos » Thu May 10, 2012 6:23 am

Hi All,

My daughter Helen, as you probably know, is in hospital having been diagnosed with low csf pressure after having icp pressure monitoring. We are waiting for a bed in another hospital, where the neuro surgeon there is a specialist in chiari.

While she is waiting she has seen an Endocrinologist, who is testing her for Addisons disease, as she feels very light headed and faint when she stands up, has stomach problems, low blood pressure...

I dont know whether the symptoms she is having now are related to her low csf pressure (possibly caused by a leak) or if she does have something else, possibly Addisons Disease or POTS?

I wonder if anyone else has any experience of this as well as Chiari.

Emma.x
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Re: Addisons disease ...

Postby Gill » Fri May 11, 2012 6:52 am

Hi Emma

Do a spot of research on Ehlers Danlos Syndrome - sometimes associated with Chiari and autonomic dysfunction. I'll post some links later, when I have better computer access.

I'm glad you've been able to progress the transfer to the Birmingham NS. I've met him once - obviously an expert, and also a very nice man. Good luck to you both with this.

Gill
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Re: Addisons disease ...

Postby jswack » Sun May 13, 2012 11:50 am

POTS is very common in Chiari patients (I have it). Jeanne
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Re: Addisons disease ...

Postby emmacos » Sun May 13, 2012 3:21 pm

Is POTS the same as Addisons Disease?

Emma.x
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Re: Addisons disease ...

Postby Beverley » Tue May 15, 2012 9:27 am

I bellive that POTS and Addisons disease can have overlaping symptoms but they are two different diagnosis.

Bev
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Re: Addisons disease ...

Postby Gill » Wed May 16, 2012 3:44 pm

Hi Emma

Sorry, I suddenly realised I'd failed to post the promised links.

This is the interesting one - a 2007 study of the link between Chiari and hypermobility/Ehlers Danlos Syndrome:
http://prettyill.com/resources/view/1_s ... ermobility

The UK support organisation for Ehlers Danlos is here:
http://www.ehlers-danlos.org/

and the USA support group (with some useful downloadable stuff) is here:
http://www.ednf.org/

This stuff might be worth looking into. I apparently have 'joint hypermobility syndrome', now formally known as Ehlers Danlos Syndrome Type 3 or Ehlers Danlos Hypermobility Type. This was diagnosed a few months ago, and came as a great surprise to me. You can have this without on the face of it being 'hypermobile'. This is a systemic connective tissue disorder, meaning in practice that you have weak joints, weak muscles, and things sag. It's therefore connected with Chiari, not necessarily because the brain is 'too big' for the skull, but because the brain 'sags' down when you sit or stand up. These are possibly the Chiari patients who respond poorly to conventional surgery.

Ehlers Danlos is also very, very commonly associated with autonomic dysfunction - so problems with e.g. heart rate, blood pressure, 'POTS' very commonly, migraine, digestive problems, breathing problems... Also with easy bruising, cuts that heal slowly, scars that are flat and white ('cigarette paper' scars), short sight, and loads of other bits and pieces.

You don't need anything like all of these things for a diagnosis of Ehlers Danlos - but when I met a consultant who took a detailed case history, this explained almost everything I've ever had go wrong with me in my entire life.

This is an inherited condition, so some bits of this would need to click with you or Helen's Dad. It's massively under-diagnosed, because medicine works in terms of specialisms, rather than 'You've got a little bit of this, and a little bit of that'. My neurologist cottoned on when I told him I felt like a badly tuned car, with nothing quite working.

This may well be a complete red herring for Helen, but maybe do a bit of reading and have a think about it.

Good luck with Birmingham.

Gill
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