Anyone from New Zealand..?: I am... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anyone from New Zealand..?

addisonman profile image
14 Replies

I am interested to know if there are any members from NZ..?

I am in Central Otago

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addisonman profile image
addisonman
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14 Replies
Wenz15 profile image
Wenz15

Hi, yes I am in Nelson. We were living in central otago too, Queenstown up until 18mths ago. Welcome! Cheers Wendy

addisonman profile image
addisonman in reply toWenz15

I am in Roxburgh

Tiggercat profile image
Tiggercat

My husband has APS and Addison's also. We are in Wellington.

He had his adrenals "trashed" (infarcted) after surgery last year which caused Catastrophic APS, but we didn't found out until he was in adrenal crisis 2 weeks later and on life support.

He is alive to tell about it.

addisonman profile image
addisonman in reply toTiggercat

Hi

Bugger..!

Yes it nearly got me also and thanks to my local Dr and the team at Dunedin Hospital am able to write this. I already had been diagnosed with Lupus APS (by my GP) after several DVT's and two PS's . My addisonian crisis was quite insidious in that two years before the "crisis" I had been admitted to our district hospital with left flank pain and unfortunately had a miss diagnosis (diagnosis was nerve pain from overuse)..2 years went by and I was working in a very remote area of Central Otago in a helicopter (Felling wild pines) and became VERY ill. Ended up back at the district hospital and was unfortunately miss diagnosed again but this time it was put down to Pericarditis. I wasn't feeling well when discharged other than the pain had gone, my local GP wasn't at all happy with the diagnosis and sent me to Dunedin for a second opinion by the Rheumatologist and it took a further 2 days to find out what was going on and of course by this time I was in a very bad way. By chance the infarcted right adrenal was spotted by ultrasound and when they discovered I didn't have a left adrenal either (lost two years earlier in the first admission at the district hospital) they filled me full of Hydro and it was like someone turning the lights on...

Bloody scary and I would suggest anyone with APS be VERY careful and any flank pain should be taken seriously as it is known that APS can have this affect on adrenals

and you WILL die from an addisonian crisis If it isn't found, very rare so isn't picked up easily buy doctors who don't have experience with APS. Fortunately my doctor is originally from the US and his mother has Lupus (I don't think APS) but he had studied up on the condition and new about APS and what it can do so very lucky.

Good to find someone who has APS and addisons as you are the only other person I know of...

addisonman profile image
addisonman in reply toaddisonman

Sorry that should be two PE's not PS's

Tiggercat profile image
Tiggercat in reply toaddisonman

If you want to see what happened to my husband, check out my blog at

livingwithaddisons.wordpres...

I have been blogging about it because it is rare to have these two conditions. Derek's chances of survival was put at 0 by the Dr's treating him. Our GP even called me while I was sitting at his bedside to make sure I was prepared for the worst as he was seeing all the test results come through.

Thankfuly ACC have accepted the Addison's as a Treatment Injury.

katrina-latta profile image
katrina-latta in reply toaddisonman

Hi there, I live in Invercargill, recently diagnosed with Hughes Syndrome/Lupus Anticoagulant. I am having a hard time trying to find a Doctor down here that can help/medicate me. Any chance you could let me know the name of your Doctor as no Doctor I have found in Invercargill knows anything about this Syndrome!

ratbert profile image
ratbert

Another Kiwi here. I live in Upper Hutt and work in Wellington. Seems I have a near neighbour in Tiggercat!

p

Tiggercat profile image
Tiggercat

Closer than you think, we live in Silverstream. Hubby was diagnosed after a DVT (and an impatient wife who demanded he go to the Dr), in 2010. Had surgery last year and suffered CAPS.

addisonman profile image
addisonman in reply toTiggercat

Silverstream near mosgiel...?

Tiggercat profile image
Tiggercat

Silverstream near Upper Hutt.

addisonman profile image
addisonman in reply toTiggercat

Ok..

MaryF profile image
MaryFAdministrator

Glad that you have found some member on here in the right part of the world! Mary F x

Tiggercat profile image
Tiggercat

What I have realised is that, although I am female, it is my husband that has APS.

If we are nothing else, NZ is an equal opportunity country. All three responses are from MALE sufferrs.

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