Arvind says APLS experts on every continent

[rockcats4]

Arvind in a chat session said there is an APLS expert on every continent. Who is it in Australia can anyone help me or give me his contact?

[Ozchick]

It's a big country-can you at least tell us what state you're in? I'm in NSW -but again very spread out. Also with all the lock outs due to covid everything changes almost daily!

[rockcats4 in reply to Ozchick]

Hi there I’m in Queensland but would happily travel the east coast if there is an “expert” many thanks for the reply

[Ozchick in reply to rockcats4]

Hopefully someone from Qld can answer you so you can have ongoing care. The problem is that you really need more than one 'expert' - Ideally a Haematologist and a Rheumatologist with a solid GP who can help point you in the right direction.

[rockcats4 in reply to Ozchick]

My GP asks at medical meetings regularly and nobody knows anyone. So Im happy to look in the capital or other states. My haematologist has heard of it but would not call herself an expert similarly with my heart surgeon and cardiovascular specialist. When I look at research papers I cant find the authors and the research is old. Two had retired one left the country.

Hence my question. There must be someone at a university or teaching hospital in Australia West Coast.

[rockcats4 in reply to rockcats4]

Oops I mean East Coast

[Ozchick]

Unfortunately my Rheumy has cut his workload to part time as he is retiring age and not taking new patients. My Haematologist is a Professor that works out of Nepean Hospital (Penrith, west of Sydney) the other Haem that works there is a dead loss and initially told me there was nothing wrong with me. It took months to find the right team for me and a lot of consults that were a dead end. When I first saw my Rheumy and described my symptoms he said "Oh, I know what you've got" and has been great for me.

There used to be a pinned list of APS specialists and perhaps one of the mods can point you to it.

[LindaMorrell]

Hi my name is Linda. I gave up on rheumatology in Maroochydore I didn’t seem to fit the norm. I battled on my own until I was diagnosed with possible MS. That was 2016. Brain lesions lesions in spine and positive lumber puncture test. APS was the best diagnosis they could give and only aspirin for platelets. 2019 High Blood Pressure then removal of mitral valve and 2 arteries. Few months later 2020 removal of right kidney. Talk of TIA’s Systemic Lupus APS and Ms is being dealt with by an excellent team. Prof David Gillis immunology and Neurologist Josh Barton at SCUH. Sunshine Coast

Karen Morwood and Sarah. In immunology great to. Both at SCUH.

The good thing is they listen and find out for me. My back up is Prof Graham Hughes and his team

I learn from Health Unlocked that I am not on my own with all this weird stuff.

Good luck which ever path you follow

[LindaMorrell in reply to LindaMorrell]

Where do you live ?

[LindaMorrell in reply to LindaMorrell]

PS. Sorry forgot to add I have been on warfarin and aspirin since 2019 as wellNow on BCell therapy

[rockcats4 in reply to LindaMorrell]

Thank you so much!! I’ll try and see what I can do! Have a lovely festive season!!!

[KellyInTexas Administrator in reply to LindaMorrell]

Thank you for your input here, Linda😊

[LindaMorrell in reply to KellyInTexas]

No worries we all go from pillar to post looking for answers and good treatment. We can only suggest on our own experiences I suppose. You stay well and have a good pain free festive seasonAll the best for 2022

[KellyInTexas Administrator in reply to LindaMorrell]

So Linda, did you also have MS? ( positive Lumbar puncture?)

Also how are you doing with the you B cell therapy?

[Ozchick]

I will send his details to you via PM.

[KellyInTexas Administrator in reply to Ozchick]

Thank you, OzChic

[KellyInTexas Administrator]

Hello rockcast.

In the website there should be a link to international specialists:

ghic.world

Let me know if you have trouble finding this.

Best of luck to you.

[LindaMorrell]

Yes had a Lumbar Puncture test. I tested positive. 2016 they found it difficult to differentiate. Between APS & MS Now with their new tests I was told I have APS & MS which are both causing me issues. The SLE is laying low and not active So one positive thing.

A lot of physical movement tests showed a lot of distinction too. I had my first 6 hour infusion of Rituximab BCell stuff 6.12.21 More head ache’s at present and weird sensations. More dizziness and still get very tired but early days yet I suppose. I have another session Monday for 3.5 hours. Fingers crossed. They are killing of nearly all of the Lymphocytes think 80 - 85%

I then wait 6 months for it all to be done again after a Brain and spinal MRI

One issue - I asked when will my immunity be back up to speed NOT for 6 months. That’s when it all starts again.

Ho hum - Bah Humbug. I am lucky to be having the treatment, without it I would imagine I would just deteriorate. Specialists said they can’t fix me or bring back any of the losses medically but they can slow it down. Fingers crossed.

Hope you are doing well.

Linda