Sticky Blood-Hughes Syndrome Support
8,157 members8,381 posts

No help in Canada

I live in Canada and there seems to be a real lack of APS doctors here. I went to a rheumatologist yesterday and she didn’t even mention the two high positive tests results. She was only concerned with my mild Lupus.

She said my severe back, leg, hip pain and headaches was because of lack of excersie due to the pain in my hip from bursitis. She recommended yoga!

I asked her how many APS patients she had, and she replied “not many”.

I was told she would put me on a blood thinner if I have a stroke, blood clots or a heart attack. I asked her if I should just wait and do nothing until one of these happens.

I am beyond frustrated. I spent an hour standing up talking to my neighbor yesterday and my back pain was severe.

What to do? I can travel in North America, but I’m not to keen on going to London, plus I wasn’t invited to the Royal wedding.

20 Replies
oldestnewest

Well nor was I turkeyfalcon but then I don’t like hats!!

Sounds like you have a real winner there - not! Have you looked at the specialist list on the About Us page of the ghic.world website? There are two listed in Canada and they may be closer than going down south. It sounds like you will have to do something with that attitude though unfortunately!

Reply

Thank you for your quick response. I checked out Dr. Fritzler and he is a short plane ride away. Everything in Canada is a plane ride away.

My gp also suggested a hematologist. In your opinion, is this a waste of time?

I’m going to start on low dose aspirin anyway. Not the rhumetogist idea.

1 like
Reply

Sounds like a plan to me and Dr Fritzler is a fan of Prof Hughes so hopefully of the same thinking. If it were me Id concentrate in that direction and say hello from GHIC!

Please do keep us updated on your progress.

Reply

Unfortunately Dr. Fritzler is retired from clinical work and only does research. I came across Dr. John Esdaile in Vancouver. Has anyone heard of this doctor? Although I don’t have much of a choice.

Reply

Have you thought of writing to Dr Fritzler and asking his advice on whom to see. Its worth a try.

1 like
Reply

I asked his receptionist to ask him for his advice. Hopefully he’ll get back to me.

3 likes
Reply

I'd love to know of any Drs he recommends. I live in Saskatchewan and have also had a hard time finding the right Dr to treat my APS

Reply

I live in Canada. Couldn’t your GP, refer you to a hematologist, they know all about APS! In fact it was a hematologist who finally figured out the cause of my stroke, If only my own GP had figured out what was was wrong with me before I had a significant stroke! I guess I went through the discovery process backwards, I had all the sticky blood symptoms prior to my stroke, but never having heard of APS, I honestly thought, I was developing M S, unfortunately, it took a blood clot in my head to be diagnosed, my rheumatologist, unhelpfully, told me that the first clot, isn’t usually, in the head. This was after my husband wheeled me into her office, in my wheelchair!

I guess that is my question, is how did everyone come to suspect a little known autoimmune disorder might be the cause of your problems?

Reply

My mother actually has APS which caused her to develop ITP . She went through ivig transfusions and months of Prednisone . Eventually her hematologist decided it was time to remove her spleen hoping it would help . After they removed her spleen they discovered lymphoma in the spleen.

I was diagnosed after 2 miscarriages and with my mom's history they tested me . The only symptom I had before being diagnosed was livedo reticularis ,which I had no idea was a symptom of anything , and migraines (not frequent enough to raise a flag) . But about 2 months ago I started to experience very strange symptoms . Numbness that would come and go , frequent migraines , vision issues , dizziness, etc. It would change hourly / daily . I got a referral to my mom's hematologist , he said it (APS) effects everyone differently and make sure I take my aspirin . He also basically said no anticoagulation until I've had a clot . I take my aspirin and supplements daily and still have symptoms . It has helped but not 100%. I'm currently waiting on the results of an MRI of the brain to rule out MS . I've seen 1 internist , 2 neurologist , 1 hematologist and 2 GPS . Everyone states that APS wouldn't cause these types of symptoms . And I truly think it's a lack of education on the disease .

Reply

I had IVIG for 8 months another autoimmune issue. It seemed to have really helped my asthma.

Reply

APS absolutely does cause these neurological issues and you must find a Dr who understands that and is willing to treat you before any permanent damage is done.

I suffered from numbness, tingling, vision issues, and a whole host of odd and painful symptoms for a year before I was finally diagnosed and treated with warfarin.

It’s not proven what causes the issue but some believe it’s micro clots or sludge blood.

Mine only got worse and I had a spinal cord infarct and two TIAs so please try and find help. Good luck.

2 likes
Reply

We saw Dr Esdaile this morning. He's a great doctor and a really nice guy, but he's not a huge expert in APS. Nevertheless, he's very keen on getting to the bottom of things. We had about an hour-long consultation.

After our appointment this morning for my wife, we've got two new referrals (one to a haematologist and one to a ophthalmic neurologist), he's ordered blood tests - done by Dr Fritzler's company (Mitogen) and ordered an echocardiogram. We have a follow-up appointment in four weeks. He wants to get the opinion of the haematologist before starting anticoagulation.

The two recommendations I got from Dr Fritzler (I just emailed him directly!) in Vancouver are Kam Shojanian and Shahin Jamal; I think either of these or Dr Esdaile might be worth a try. If you do go with Dr Esdaile, contact his office on Burrard St to make sure they got the referral. Apparently our GP had the wrong fax number.

Reply

Thank you. I’m getting a list together.

Reply

I have the same issue here in Idaho. Maybe we should compile a concise list of highly technical descriptions of symptoms and treatments of the disease. We could introduce these Medical Professionals to us and our concerns. I have tried handing my various Medics and Veterinarians a typed description. Most of the time they are insulted at the notion that they don't know everything but at least we'd be on record. Once I even had a GP read it before he put it in my file.

Something needs to be done.

1 like
Reply

At least you had one doctor read it before he filed it.

Reply

I'm going to see a Dr who does reasearch on APS in Ottawa. His name is Dr Cabral at the Riverside Hospital. See if you can get a referral. You can google him and he has an impressive resume.

Reply

Thank you.

Reply

UK does seem much better at this. I am in Virginia, and have been quite disappointed with my options. Everyone seems to want to be a Lupus doc, and don't care about APS or don't understand it

Reply

I agree. Maybe APS is now at where Lupus was years ago.

Reply

There is an APS Clinic in Toronto (UHN- uhn.ca). I have a scheduled appointment on July 11/18

Reply

You may also like...