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Hughes Syndrome APS Forum

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NZ Rheumatologist

Nellennium profile image
6 Replies

Hi

I'm looking for someone to recommend a Rheumatologist in NZ for me. I live in the Wairarapa but can easily travel to Wellington districts.

I found the website that lists all the ones available in NZ but I'm really looking for a recommendation as I'd like someone to take me seriously!

rheumatology.org.nz/rheumat...

Since 2006 I've had 4 early miscarriages and 3 missed miscarriages where the baby kind of stops and starts growing and then stops again at 10 weeks. I had a D&C with my last and the tests all came back normal.

I have my son who is 17 months and perfectly healthy. However while pregnant with him I bleed during the first Trimester, hemorrhaged in the 2nd, had horrible swelling in the 3rd and protein in my urine. I then had a horrendous birth and an extensive recovery.

I had numerous tests in 2013 but no one ever told me the results as I was always seen by a different Dr and none of them every looked at my medical file or results. I also had tests done this year in June after my latest missed miscarriage.

It looks like I have APS/Hughes Syndrome. The Dr I saw recently to follow up on my recent results (Dr David Cook Obstetrician & Gynaecologist) listened to me when I said I tested positive in 2013 (I showed him the results as I requested my whole medical history file to study myself after getting no where with Dr's) and tested positive recently in June, he didn't feel the need to do more bloods and has prescribed me aspirin, told me to get pregnant and then be referred back to him at 13 weeks for monitoring.

I'd like to see a Rheumatologist and talk to someone who knows what they are doing! It's all very well being on aspirin for pregnancy, but what about the rest of my life?

The obvious thing would be go to a GP and ask for a referral, I admit I am afraid they won't though. My mother asked her GP to test her as she has many of the Hughes symptoms and wondered if they were the cause of her migraines. The GP said she'd never heard of it and dismissed the idea. I actually have very little faith in Dr's in NZ and hate our health system. Apart from this latest visit they have never done me any good!

I tried Boulcott Hospital, but they said they need a referral from a GP and also their Dr Sue Rudge is fully booked until Feb 2016.

Sorry for the giant wall of text!

I also have a list of other day to day problems I have like, poor memory, red rash across my cheeks/nose/forehead, very cold feet/hands and sometimes nose/ears, pins and needles in my legs, sore knees/hips, what I call sore bones - where they ache and get so cold I have to take a hot bath for an hour to feel warm, my body seems to over react to anything 'wrong', fatigue, migraines, over active sense of smell, motion sickness, nausea, poor balance, react to metals where my skin peels away from them (except surgical steel and platinum), when I get pregnant it's like my immune system goes into over drive and I get cold symptoms, sore teeth/gums and a sore throat within days of conceiving, bruise easily, dry irratable skin, dry gritty eyes, .... and many other things I can't remember right now!

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Nellennium
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6 Replies
Tiggercat profile image
Tiggercat

Nellennium I am not sure if I can help with a Rhumy in the private system. I know of Sue Rudge, and she is very busy but her main focus is children rather than adults.

You could try Will Taylor. Wakefield Specialist Medical Centre, Rintoul Street, Newtown

Wellington, Tel: (04) 381 8120

He is more also a Rehab specialist, but Derek has seen him about his APS and the results of CAPS. He also deals with young people with stroke.

the biggest problem in NZ is that they consider APS in women as an OBGYN issue.

Good luck.

Nellennium profile image
Nellennium in reply to Tiggercat

Thank you Tiggercat for your reply :)

And for your recommendation! Urgh why is the NZ health system so hard and lacking. Sometimes it's very obvious we are at the bottom of the world >.<

hardinse profile image
hardinse in reply to Tiggercat

Sorry what is CAPS?

Tiggercat profile image
Tiggercat in reply to hardinse

Catastrophic Antiphospholipid Syndrome.

Microclots affecting multiple organs. For Drrek it affected his Brain, skin, heart, lungs, Livr, kidneys, and he lost his Adrenal Gland.

peterm profile image
peterm

Sorry to hear about all your health issues. I was treated in Lower Hutt by Dr Rajapakse. I would definately recommend him. Good luck and God bless

Nellennium profile image
Nellennium in reply to peterm

Thank you very much Peterm :)

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