Canadian doctors specializing in APS

[siveinvan]

Just now got an email from Dr. Hughes! He suggested Dr. John Esdaile working in both Vancouver and Calgary as a resource. Dr. Esdaile has worked alongside Dr. Hughes and is extremely knowledgeable about APS. I will try to get referred and let you all know the outcome.

[MaryF Administrator]

This is great news for you lot over there in Canada. Please keep posting and tagging about it, as it will help you lot and beyond.... a great bit of work, well done xxx Mary F x

[Skyllark]

thanks for this info - being in ontario - getting your cost covered for traveling byOHIP is trying - been there - its not easy...

[KJay]

Fantastic news Sive. Hope all goes well and let us know how you get on xx

[siveinvan]

I will def. post for any other Canadians. Who knows? Maybe there's more Dr.s out there having a clue than we thought. But I thank Dr. Hughes for actually getting back to me. My hero.

[whynotme]

Do I ever appreciate this. Right now I'm waiting on a referral to a Rheum in St Catharines ON crossing my fingers that he knows at least more than the others I have been to. Neuros, Immunos, Haemos, Internalists....I'm so exhausted. I would go there in a heartbeat if I could get an appointment. If you don't mind contacting me with any of your thoughts on this Doc I would be forever grateful I hope you find this is the answer to your prayers.Thanks,.... Darlene

[Skyllark in reply to whynotme]

what Haemos have you been to - my wife has an apointment with Dr.Mark Crowthers in McMasters Hamilton... aparently he's the man for Anticoagulation in Canada!

[whynotme in reply to Skyllark]

I have not had an appt with Dr Crowthers for my illness. I actually had the pleasure of working in a lab that he mentored. He is a great doctor and very personable. I'm sure your wife will get the best treatment from him. I'd love to hear how it goes for her because I haven't had any success elsewhere and this may be just the link I need....Thanks, Darlene

[siveinvan in reply to whynotme]

Definitely let us know!!! I am going to start ss-l-o-w-l-y put together a list of reputable Canadian doctors...in fact after hearing about Sassyone's experience I think I'll also start an 'avoid' list...

[danluc in reply to siveinvan]

Hi there, Wondering if you ever got a chance to start a list of reputable Canadian physicians. I am having problems being treated properly with APS because I haven't had a major event, the hematologist almost laughed in my face. I have all the other symptoms, am unable to work, and diagnosis was confirmed by neurologist. Let me know. Thanks

[whynotme in reply to Skyllark]

Sorry I meant to direct my reply to Skyllark

[siveinvan in reply to whynotme]

Darlene,

Certainly don't mind at all! I know exactly how you feel. Off to the GP in an hour to beg for another referral. (I think she thinks I am crazy). TTYS!!

[jessielou]

Hi

Great news, I hope the doc answers your questions and gets things moving for you all.

Take care gentle hugs love Sheena xxxxxxx

[SassyOne]

Thank you for sharing, it's nice to know hope is a little closer to home. I have a referral to Dr Kovacs in London Ontario, I'll only have to travel a few hours to see him but I am really hoping he is good. my appointment was for The end of July but got moved up to Tomorrow because of my condition. I'll let you know how the appointment goes.

[siveinvan]

Good luck!!!!! Let me know how it goes when you get home!

[SassyOne]

The appontment was a disaster. I am praying this doctor is right, because if he isn't we all know the consequences.

"PE was provoked & the antibodies are coincidental" he said none of my other symptoms are related to the antibodies in my blood. He seems to think I'm nuts I guess. So much for my high hopes of getting some answers.

He took me off heparin. I am 7 weeks pregnant. I have no clue where to go from here.

[siveinvan in reply to SassyOne]

So, how many blood tests did he give you and how far apart? What is PE? Is this your first pregnancy?

[siveinvan in reply to SassyOne]

Sorry, just read your profile. I would say that if you have had 2+ miscarriages, it is highly possible that you are sero-negative; if you have had multiple blood tests over weeks, AND all of the symptoms....why did they put you on heparin to begin and then take you off? Sounds super confusing for you...and what exactly does he mean by 'the antibodies are coincidental?" To what? And what antibodies is he talking about? XXX

[SassyOne]

Pulmonary embolism is blood clots in the lungs. They happened a week after surgery so he feels the surgery caused the blood clots not APS. He wants to do the test in his own lab. He took 4 vials of blood to retest me, I thought that was oddly excessive. I have previously had 2 positive lupus anticoagulant tests taken over 6 weeks apart. He said that 1-2% of normal people can have the antibodies in their blood and be fine. He felt since I had a succesful pregnancy I would have another I guess. I was on heparin in my pregnancy because of my PE's and my GP put me back on it because I was in it last pregnancy. Hemo said discontinue the heparin until after birth. He kept shaking his head saying it isn't the cause of my headaches, numbness tingling, shooting pains etc. they're unrelated. I'm so confused.

[siveinvan]

Oh man. You're right. Confusing and scary, I can only imagine. I would, then, look at the possibility that he may be right. The main thing is that this baby is going to be ok. <3 If you were on Heparin during your last pregnancy, I would definitely tell your GP that you want to be on it for this one. It's too big and too scary to worry about for the entire 9 months. Would he/she allow you to continue considering you were on it last time? I'm not a doctor (math teacher) but I would say there seems to be no denial that there is something going on. Positive antibodies and all your symptoms including PE??!! If you have a good relationship with your GP, go back immediately and reinstate the Heparin. (That's only my opinion...) XXXX

Sive

[siveinvan]

Print off some of Dr. Hughes literature and scare him into putting you back on it.

[siveinvan]

Okay, fellow Canadians,

Seems that Dr. Esdaile, colleague of Prof. Hughes, works a pithy one day a week in Vancouver and the rest is spent lecturing. I scored an appointment on July 3rd. (Soon by specialist standards, forever in joint pain time...) Will keep everyone informed. Sigh....

[jessielou in reply to siveinvan]

Good luck sive, I hope it goes well!! Take care gentle hugs love Sheena xxxxx

[siveinvan]

Thanks Sheena...XX

[siveinvan]

GOOD NEWS! Dr. Esdaile, here in Vancouver is outstanding. Colleague of Dr. Hughes. He was patient, incredibly thorough, did every blood test known to humankind. He smirked when I said I thought my GP sent me here just to shut me up. He is one of a kind and knows his stuff. So 3 more weeks to wait for all the results. He said that most doctors aren't testing for the right things...he got all my records from the last 10 years in about 5 minutes. Amazing......if any other Canadians need a place to be seen/heard, this is one.

[fredred in reply to siveinvan]

Hey how are you doing now, I see dr. Esdaile next month. Do you still find him goog. Im alittle nervous as I have been dealing with doctors who dont listen at all and tell me its anxiety the dont even open mybfile. Very frustrating. Could you possibly tell me what to expect? Thank you :

[Skyllark]

Where is Dr. Esdaile main office, does he come to Ontario, Canada?

[Wittycjt]

Warrants repitition

[shefab]

Were you ever able to find a doctor in canada who specializes in APS?

[HollyHeski Administrator]

Hi I see you have just joined but sadly you have posted on a very old question.

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