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Old 03-19-2014, 02:51 PM #1
lyssa lyssa is offline
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Join Date: Mar 2014
Location: Canberra, Australia
Posts: 1
10 yr Member
lyssa lyssa is offline
Newly Joined
 
Join Date: Mar 2014
Location: Canberra, Australia
Posts: 1
10 yr Member
Default Another Aussie - rejoining after many years absence!!

Hi all,
Aussie here!

I originally joined this site back in 2000 when it was Braintalk, after a sudden and severe increase in headaches and migraines. I stopped posting around 2003 I think, although I have continued to suffer daily headaches and chronic migraines for the last 14 years.

Six years ago life came completely tumbling down when after 7 months in hospital I was diagnosed with systemic lupus - my immune system was attacking my heart, lungs, random muscles, large joints and skin. 18 months later I commenced training my own assistance/service dog, who greatly helps me with mobility.

More recently I've developed a problem with falling, and about 5 months ago I suddenly found I had lower back pain and my hips were very very uneven and my right hip was v swollen. I was admitted to hospital for a week, but after not finding anything and not looking hard, and despite my protests that something was WRONG and that I was very sore, I was discharged. Recently I finally got a diagnosis: compression fractures (wedge) of at least one vertebrae, plus significant worsening of my scoliosis. Also the wedge is in the side to side configuration, not back to front, which from what I've read can be a bad thing. I moved house a few days after getting out of hospital, and despite the pain, had little care for my back.

I am furious with my local hospital for the lack of diagnosis. I have yet to get all the scans done but from just looking at my back the specialist was sure enough to refer me to a neurosurgeon immediately. He thinks my spine isn't stable now, no thanks to me trying to soldier through it and having no rest.

So I'm re-joining here to have some support from spine-type people if I have to go through a fusion or similar, but will likely hang around on headache, my old haunt, and see what the autoimmune lot have to offer too.

Sorry for the ridiculously long post.

~ Alyssa and mobility assist dog Apollo
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Old 03-19-2014, 03:25 PM #2
Lara Lara is offline
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Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
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Join Date: Sep 2006
Posts: 10,984
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Hi Alyssa,
Welcome to the NeuroTalk Support Groups!

I'm sorry you've been in so much pain and having difficulty with getting a diagnosis.
Here are a few links that might be helpful although you probably know the forum format already.

Spinal Disorders & Back Pain Forum

Autoimmune Diseases Forum

Headache Forum

Chronic Pain Forum

p.s. NeuroTalk is a totally different site from BT although you may find some familar faces here.
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mrsD (03-19-2014)
Old 03-19-2014, 10:40 PM #3
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Darlene Darlene is offline
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Join Date: Sep 2006
Location: Once a Texan, always a Texan.
Posts: 11,976
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Darlene Darlene is offline
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Join Date: Sep 2006
Location: Once a Texan, always a Texan.
Posts: 11,976
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Wink Nice to meet you!!


Alyssa,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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"Life without God is like an unsharpened pencil -- it has no point.
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