Frustration

Hi everyone

I had an appointment with a heamotogist speacilist in perth western Australia yesterday. It was a very long day and today im suffering. A 10 hour round trip.

I'm extremely frustrated at the moment. He was an excellent speaclists in explaining how your blood vessels work why we clot why its sticky but as soon as i mentioned Hughes Syndrome he said it wasnt relevant to lupas anticoagulant as lupas anticoagulant has three different compntents. He continued to call its lupas anticoagulant or begrudgingly said aps sometimes or the large antiphosphilp syndrome.

He didnt believe my debilitating headaches or fatigue, numbness, tingling, cognitive functionality or dizziness had anything to do with his words "lupas anticoagulant ".

His words " thats not usually what happens with lupas anticoagulant. "

"You might just have migranes unrealated to lupas anticoagulant "

The up shot is he has ordered more bloods testing be added into my follow up scheduled blood test.

He acknowledged my stroke was caused by the "lupas anticoagulant ".

He parting words were, "i dont think its a major problem, we will see if you need to go on warfrin or just stay on asprin ".

I told him i wasnt looking to having another clot in my brain and he said " no we cant have that "

i dont care what medication im on to help me but it left me feeling let down that he couldn't acknowledge my symptoms as a direct link.

I feel completely broken that a younng doctor (50) just waved it over and lost what to do now.

Finding an aps specialists in Australia means a trip to melbourne which is a plane flight away. One side of the country to another.

Do i just take the medication and hope my symptoms ease or do i need more help.

Im going to come straight out to my general doctor and tell him my concerns.

I felt like telling him to go online and read up his information but was gobsmacked and tired.

Cheers karen

thanks for having this forum at least here i can vent.

[MaryF Administrator]

HI there, sorry about your tough travel needs! Hopefully this doctor with half the information will indeed do something about your anticoagulation, and I suggest you do book a trip to Melbourne, if you have an appointment with Dr Godfrey it is more likely to guide your local care to be more workable for you. LA testing positive is of course Hughes Syndrome/APS. MaryF

[Hidden in reply to MaryF]

Thank you mary

Literally impossible for me to book a trip to melbourne as its quite expensive and im on a disability pension. Hopefully something good will come out of this trip yesterday

[MaryF Administrator in reply to Hidden]

Sorry to hear that, in the mean time, others on here from Australia may have some more localized knowledge, you can politely email your current doctor the Hughes Syndrome Foundation charity website, highlighting certain things: hughes-syndrome.org/

ie blood tests: hughes-syndrome.org/about-h...

and symptoms, and related conditions: hughes-syndrome.org/about-h...

hughes-syndrome.org/about-h...

MaryF

[Hidden]

Thank you mary x

[Ozchick]

Jetstar!! Beg borrow or steal (well, maybe not steal!) when a cheap fare comes up-if not to Melbourne, maybe Sydney. If you can get return for around $250-$300 and cry when you ring the doctor's receptionist they will squeeze you in. This specialist didn't know that APS and Lupus Anticoagulant are the same thing? I would be very unhappy with that outcome. It is a huge relief when you get diagnosed and perhaps you could point your GP to this forum and start you on a trial of warfarin?

[Jane01]

Can you contact Dr Godfrey and get him to talk to your Perth Dr ? Can Dr Godfrey do a skype appt ? Do you have to see a Hemotologist ? I have found General Physicians to be very good on a variety of conditions... often better than the considered experts.. and once again - the two Drs may be able to discuss your case.. Are there any special price flights ?

[GinaD]

I do agree that flying to Melbourne is the best solution. And a skype apt may be all your need to substitute for that.

You could try printing off all those papers Mary referred to you above and then try to (politely -- which may not be possible) bombard your doctor with them.

Take a friend or relative with you. Make a bullet list of points and questions, with specifically (rude) questions such as, "Could you please refer me to exactly what evidence motivates you to distinguish "lupus anticoagulant" from "APS?" (and then make sure his evidence is dated post 1990 or so as APS was only described by Dr. Hughes in the early '80s.)

Confronting a doctor in such a way always seems rude and imprudent. After all -- you may find yourself entrusting your life to this bloke at some time in the future. But you play the cards you have to play. And it might be time to bring in all the big guns if you do not have the option of flying cross county.

(If you do fly cross country then the above conversation will be between doctor and doctor, leaving you on the sidelines and perhaps safe guarding your relationship with the local doc who may then be able to follow up locally instead of more cross country flights.)

And the biggest gun of all? Bring in the health insurance company/s! I don't know for sure but I'm guessing that Australia -- like the rest of the civilized world (which my country is not part of ) has a single payer, universal health system. If you are diagnosed with APS and treated for such, its going to save them a lot of money. Just one hospitalization for a stroke (not even counting worse case scenarios for stroke after effects) is going to be more expensive then treatment with warfarin or injectibles. Some years ago when I was trying to talk my rheumatologist into the notion that hip arthritis flares were partly motivated by a recurring clot in the pelvis I finally got that MRI (which was inconclusive) by talking to my insurance company. They agreed that an MRI, while pricey, was a good bet as it would save them money if a higher INR # could postpone the surgery for a few more years.

Good luck, and let us know how things progress.

[Lure2]

Hi,

I think you have got very good solutions above. Hope you can follow them as from my Swedish point of view that doctor knew nothing of APS. It is very dangerous to talk to them.

Good luck from Kerstin in Stockholm