Help in Canada. I need to find a doctor/neurologist.

[snorkle272]

Hi. I was diagnosed 12 years ago with antiphospholipid sydrome/ APAS/ Hughes syndrome. I am trying to find a doctor in Canada who specializes with this disorder. I am exeriencing a lot of falling at the moment. My legs just suddenly give out on me, and down I go. I haven't hurt myself badly yet - just keep re-injuring tears in my left shoulder. I will be getting fitted for a cane this week, and may need a walker soon. Head CATscan and MRI show no signs of anything causing this particular problem. So if any Canadian can tell of an available specialist in Canada I would really appreciate it. I live in Ontario but am willing to travel. My doctor has already sent 3 referals to a team in London Ontario - over an eighteen month period. They have not replied at all. I am getting desperate, and very depressed. Thank you for any help you can offer. Snorkle272 .

[Lure2]

Hi,

I am very glad that you feel ready to search for a Doctor who understands and who is willing to listen to you and help you to feel better.

If i were you I would not look for a Neurologist in the first place, as you no doubt have symptoms from HS/APS. Then it is better with a Rheumatologist who knows (specialized) aboat autoimmun illnesses. The Neurologists we have found on this site, do not usually "get" what this illness is about - too sticky and thick blood!!!

Keep my fingers crossed ........

Love from Kerstin

[jaymacz28]

I live In Ontario as well. I'm 34 years old and I was diagnosed with APS last December following a clot in my eye. They tried me on Xarelto 10mg for a few months until I had another stroke in May. Now I am on Warfarin and still trying to get my INR up to the range the doctors want. Are you familiar with any of the specialists affiliated with Hamilton health sciences? My rheumatologist and hematologist are both in Hamilton. They have been pretty good with handling my situation and it seems they are both very familiar with APS. Still trying to work some things out, but overall i'm satisfied with my treatment and hope these dangerous clots will be a thing of the past. I've actually been able to email my hematologist with questions and he has replied back the same day. I am impressed that he makes time to help out his patients outside of an appointment. I understand your frustrations, because it took a lot of different doctors and testing to finally get diagnosed with APS. I'm married, have a young family, and an active lifestyle. I am aware of the challenges living with APS, but I do my best to not let it control my life. If you are interested I can give you the names of my rheumatologist and hematologist. Good luck.

[snorkle272 in reply to jaymacz28]

Yes I would gratefully appreciate the doctor's names. Is Hamilton Health Sciences what was before named, McMaster hospital. ?

[Ozchick in reply to jaymacz28]

When I was in hospital last November they screwed up my Xarelto-10mg instead of the normal 20mg I take. Took me 3-4 weeks before I felt 'normal' again. I have aspirin 100mg along side it. With the past history of my clots the Haematologist was pretty miffed they didn't stick to his protocol.

I know that Xarelto isn't the first drug of choice but it suits me and for that I'm grateful. It's bad news that you had a stroke but I think some doctors err on the side of caution (or fear of getting sued) but to me, giving you 10mg it's like giving you warfarin and telling you to keep an INR of 1.5 - no help at all.

[jaymacz28]

It kinda categorizes the hospitals in the Hamilton area so the doctors can cover a larger area. I've seen doctors in Hamilton General hospital, St. Joseph's hospital as well as McMaster. Dr. Mark Crowther is my hematologist, and Dr Kimberly Legault is my rheumatologist. I'm not sure if they are accepting new patients at this time, but those are my doctors and I am pleased so far. As far as I know you can only see them through a referral from your GP.

[jaymacz28]

I forgot to mention that if for look them up on "Rate my MD" they both have great reviews.

[snorkle272]

Thank you so much for this information. And I willl look them up. I'm curious as to why we need to see a rheumatologist? The hematologist I totally understand.

[Lure2]

Hi again,

HS/APS is a rheumatological illness and only a Rheumatologist is specialized in his profession for Autoimmun illnesses like HS/APS, Sjögrens, SLE(Lupus).

Also Thyroidea is one of the "three cousins" that often go together and also sometimes are mixed up if you do not know to distinguish the symptoms very well. A Specialist (Rheumatologist) knows what drugs you need to treat the different diseases. Far from all Rheumatologists are specialized but we need such a Doctor.

Kerstin

[snorkle272]

Thanks Kerstin for this information. I knew this before, but I forgot.