Has anyone contacted the doctors who deal with Hughes Syndrome directly (without a referral) in the Toronto & area? Please, please help!

I'm finding it extremely difficult to get a doctor who specializes in Hughes Syndrome in the Toronto area. My family doctor will not give me a referral - I'm at a loss and I'm now experiencing worse and more frequent symptoms. Can I call the clinic and make my own appointment at Mount Sinai or Toronto General?

7 Replies

  • Hello John. I dont know the system in Toronto but Im sure somebody from the area will be on and let you know. If it was me though I would just call them and ask - they can only say no but they may be able to advise what you can do to get a referral if the answer is no.

    Please try not to worry too much as that is going to make your symptoms worse. I know that is easier said than done. Let us know how you are getting on if you do call directly. Good Luck!

  • eh - the only doc I know in the Tononto area is Dr. Crawthers in Hamilton... there should be a Dr. in Toronto West. - My wife deals with doctors in the Kingston area... its really hard to find a doctor in Canada that really knows alot about Hughes.

  • Thank you so much for your answer. How were you able to get in to see these doctors? Can I contact them without a referral from my family doctor? Thank you do much off your help.

  • Hello, I do know a highly regarded Rheumatologist at the University of Toronto. She will know exactly whom and where you need to be seen. We were co-investgators on clinical research projects. If you answer me by email, I can talk to you. I live in the States, but my plan allows me to call Canada. I'd be pleased to give you some help. Don't hesitate to contact me.

    Take care,



  • Great! Mary F x

  • Try going to the APS foundation of America website - someone there might be able to help you. There might be some from Canada on that site who might know. :)

    debi in Fl w APS

  • May I suggest you have a look at the contact, bottom left... ring and see if they can advise on somebody closer to home, this is a very useful and developing network! apsaction.org/

    Mary F x

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