Sticky Blood-Hughes Syndrome Support
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Hoping for a diagnosis

Hi everyone,

I'm hoping to get a diagnosis for my wife (F, 33). We have an appointment with our GP on Wednesday and I'm just trying to get everything straight before we see him. The booklet on the GHIC web site was a huge help. I'll be taking it with me. These are the things that lead me to think Hughes Syndrome is a likely scenario.

- Massive pulmonary embolism (Nov 2015), "unprovoked" - but was preceded by a two-week long migraine.

- Chronic headaches -almost daily - for at least ten years. They were enormously improved during the six months she was on blood thinners (Xarelto/Rivaroxaban).

- Two seizures, one in 2002, one in March 2017. No diagnosis of epilepsy. The one in 2017 was preceded by a severe migraine.

- Cold extremities.

- Occasionally angina-like chest pain (this is new since the PE). Often seems to coincide with a headache.

- A period during the summer of 2017 with visual disturbances (blurred/double vision).

- Occasional severe abdominal pain after eating.

- Probably a fractured metatarsal in October 2017 (never diagnosed, but seems likely in retrospect).

- Not the greatest memory!

Two sisters have frequent headaches, one of them has had thyroid issues (Hashimoto's/cancer). Her mother had a (fairly small) PE and numerous TIAs.

Looks pretty clear cut to me, the only snag I can see is that she was actually tested for APS after her PE and all the tests came back negative. However, I've now read about seronegative APS.

My main hope with the GP appointment is that he'll agree to let her go back on the Xarelto while we wait for an appointment with a rheumatologist. We're in Vancouver, Canada, by the way, so we're fortunate to have a pretty good health service.

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Hello and welcome. I’m so glad that the booklet you downloaded from the website has been helpful. Has your wife thought about taking baby aspirin whilst she waits to see her GP?

The website also has a couple of recommended specialists in Canada but don’t know if they are close to you. It may be that you will have to go across the border to seek help although having said that more are turning up in Canada than there used to be.

Have a read of Prof Hughes blogs too as he always has a patient of the month, these often talk about difficult cases which don’t fit in the so called diagnostic criteria box. Remember it’s the tests that are failing the patients rather than the patients failing the tests!

I’d also get the GP to do a full thyroid panel, vit D, B12 and ferritin. These are known to be a problem with our condition as are other autoimmune conditions like Sjogrens that can join in the party.

It is possible that your wife could have a coexisting primary headache condition which may need a specific medication. I have one but since I’m on LMWH it has improved but not entirely controlled.

Good luck when seeing your GP do keep us updated.

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Thanks for the welcome! Oddly, it was aspiring that got me going down this route. I was reading a book about migraine treatments (she's had a particularly bad run of headaches for over a month now). One of the suggestions was aspirin as a migraine abortive. Then I remembered my earlier suspicions that her headaches were related to clotting. She took a bunch of full-strength aspirin and it seemed to coincide with her best couple of days headache-wise. It might have been the analgesic effect, but ibuprofen, acetaminophen and even codeine weren't having much impact.

They do seem to upset her stomach a bit, though. We do actually have a week's supply of Xarelto (for flights and long car journeys) - I know it's a slight risk going back on those; but her initial PE was so massive that it was borderline that she'd have come off them in the first place. So she's back on those for a few days. I did buy some baby aspirin as another option.

She's had pretty extensive bloodwork done over the past few years - like you do when you have a bunch of unexplained serious medical conditions! - but I we can get the doc to look at those again. She's on iron supplements already.

Unfortunately, neither of the docs suggested on the GHIC web site are particularly close, but I did get a response from Marvin Fritzler and he suggested a couple of rheumatologists in Vancouver - Kam Shojanian and Shahin Jamal. They both seem to be in fairly senior positions though, so I hope it won't delay an appointment too long.

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My old GP moved to Vancouver his name is Trepass & he knows all about Hughes because of me. He is also a very thorough doctor. Never know you might be able to look him up, I know he is in practice there.

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Welcome to our friendly site where we all have APS and try to help eachother as it is a rare, tricky illness and not known by most Doctors.

1) If she has got our illness (as I believe she has) she should have a Specialist who knows autoimmun illnesses like ours and who has had patients like her before.

2) Gets an anticoagulation drug that is the best choice as to her symptoms. Most of us feel good on Warfarin with an INR over 3.5 as Xarelto may not be the correct blood-thinner for her neurological symptoms and PEs/chest-pain.

Keep an eye on any high bloodpressure!

My best wishes!

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I want to add;

She can get a diagnose from symptoms and from a family-history and I hope you read what APsnotFab has said as she knows a lot from own experience also.

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We're hoping that Xarelto or similar will be the way to go; it did seem to offer a lot of relief to the headaches before. We'll keep a proper diary this time now that we know what to expect.

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Doctors are taught in med school to fear blood thinners — particularly warfarin! Your wife’s trajectory seems a close match to my own — saving I did not have PEs but did have all the rest plus a series of mini strokes. I too was placed on thinners — warfarin — for a time and my symptoms (DVTs, headaches and migraiiness at that point) had resolved. But when the warfarin was stopped they all came roaring back. I begged to be put on warfarin again, but doctors would not listen. In hind sight, my diagnosis may (again) MAY have been speeded up had I been kieeping a daily chart of symptoms. I finally had a full fledged, slurry vision, face droop, half side paralysis stroke and that, while not the final step in diagnosis, was the sharp turn which lead to my diagnosis.

Good luck!

Gina in West Virginia

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I'm hoping the previous PE will be enough to make them fear NOT being on blood thinners!

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One would think. Except in many -most? -med schools profs try to illustrate a patient bleed out to ensure they do not over prescribe thinners in their practices.

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My bother is in Vancouver and told me of about good physician there who specializes in APS. I will contact my brother and ask for this doctors contact info.

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This would be great to know! Thank you.

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Just sent him an email. My brother is a retired professor from UBC so he’s nicely connected- can help find info quickly. He had called this doctor on my behalf and this doctor had a working relationship with Professor Hughes. I’m thinking he hopefully works with the GP Sue L. Mentioned.

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That would be amazing! Thank you. I actually work in life sciences at UBC, so I suppose there's a remote chance I might know your brother... small world!

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He was at Emily Carr and liasoned with UBC in the fine arts - so he was on Granville Island a lot. He specialized in lithographs.

Gary Bowden? Doubtful! MFA - often in Italy.

You would know his wife, Virginia. She is principal of magnet science schools in Vancouver for gifted students.

She teaches in China for certain times of the year.

You would know of their son William - physics Dept UBC but currently doing PhD at Oxford in England. He’s 27 or 28 now. He was written up in a UBC journal for lasers and precision time keeping fairly recently. Implications of physics/ laser technology and time.

Our Daughter is doing PhD at Princeton- when my daughter and I went to London for my appointment at London Bridge Lupus Center about 13 months ago, we met up with William and his girlfriend and had a wonderful time. ( despite my migraines because my INR was at 2.9) Dr Hughes prescribed Fragmin and reset my INR upwards at 3.5 to 4.0)

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Ok- my brother responded back. Dr John Esdaile. Also in Calgary ?

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That is a great list of symptoms to bring with you. You’re well prepared and your wife is fortunate to have you helping advocate for her. This list has many knowledgeable people who are generous with advice. I’ve learned a lot from them.

Also, while warfarin helps most, it turns out that some people do better on the other anticoags. Your wife has experienced great relief on xarelto, so at the very least that is good information that may help the doctor in their assessment. I fare better off of warfarin and on a different anticoag. I had severe debilitating migraines and was on warfarin for 10 1/2 years. Then I went on eliquis, and they were miraculously 90% better.

I lived in Canada for years, and had good care while there for a broken metatarsal (the first one).

Good luck!

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Hi and welcome, both myself and all my children, (grown up children now), are on one 75 mg enteric coated Aspirin twice a day, and ALWAYS on a full stomach, these are small doses but they work for us. Also if you are doing testing, do get her Iron, B12, D and Thyroid checked, although a lot of us do private testing for B12 and also for Thyroid as the testing is not very reliable and very linear. I prefer the detail of better tests which in my case showed up everything. Do make sure your GP refers you to one of our recommended specialists, some on the charity website, and a lot more under pinned posts, on the right hand side of the forum. I am very pleased you found the book so helpful. MaryF

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Quick update! We saw our GP today. Things went about as well as could be expected, he listened, took notes and said he was going to look into things further. He's also setting up a referral with Dr Esdaile - thanks KellyInTexas! He wouldn't agree to a new prescription for Xarelto immediately, suggesting just aspirin in the meantime. But he is going to follow up soon, so maybe we can change his mind then. Or maybe the aspirin alone will be effective. Hopefully we won't have to wait too long for the referral. These things can be a bit unpredictable.

Thanks everyone for your suggestions!

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