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Sticky Blood-Hughes Syndrome Support
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Hemiplegic migraine

I fell ill after having a migraine I presented with stroke like symptoms still left with no left leg or arm movement. Speech and face better. Has anyone with aps suffered this

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Hi, I myself have not had such an extreme episode, however many on here have, and quite a few have that diagnosis alongside their Hughes Syndrome/APS. MaryF

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That's very interesting I'm still in hospital they are letting me go with hospital transport with my wife to the the proff so will be interesting what she says

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Do you mean Hemiplegic Migraine? No such thing as Paraplegic! Here are some details:

migrainetrust.org/about-mig...

Very common for it to be mistaken when someone is actually having a Stroke.

I hope they did a CT scan and repeated it 24-48 hours later?

I was told thats what I was having because CT scan was clear but actually it was a Stroke which showed on the scan the following day. Again apparently this is also common.

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Yes sorry they said it so fast I didn't catch it and obviously got it wrong lol they done an mri stroke wise was clear but found something on my pituitary gland so need another scan x

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Yes it is hemaplegic, not paraplegic, migraine, many find on the right medication they go away or greatly reduce. MaryF

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Hi, I have edited the title of your post, I replied to your post with a dire migraine myself, been doing classic word swapping for days now, on the mend now, and off to work out. MaryF

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Hi, I have migraine that mimic stroke too. Visual loss, speech problems, some without a headache?? Very scary. Hospitalised with scans every time as they worry about the APS. Sometimes I worry that I will misjudge it and be having a stroke but treating it as a migraine. Who knew that migraine could be like this, was a surprise to me. Hope you are ok.

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I had a migraine before it happened and didn't want to go to hospital. They've done a mri so it's not a stroke but I don't know how long it will take to get the function back in my arm and leg. I was terrified when it happened is about all I can remember and my wife upset because she thought she was going yo lose me as this never happened before. I'm nearly at st Thomas hospital to see proff hunt so hopefully she can sort me out as my inr is mental so need to sort it really

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Our thick blood is our worst problem with this illness. When you get it stable and at the correct INR you will be better you will see.

Kerstin

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I have these too. Horrific and frightening. I'm lucky that once it passes I'm ok. They have done numerous CT and MRI scans on me and my consultant says she thinks it's just the way my APS manifests itself sometimes xxx

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I do think it's my aps waiting in waiting room to see professor and hopefully she can help but I need to have another scan for my pituitary gland as a dot was seen on it so need to make sure it's nothing to worry about xx

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They called mine a " TIA, a Temporary Ischemic ( clotting) Event." But after 3t trips to the ER with all the symptoms of a stroke finally a doc ordered an MRI which revealed these were not " temporary" events with no damage, rather I had suffered through dozens of mini strokes which left leisons on my brain. ( I had dismissed the symptoms of many and had not gone to the ER for what I told myself were panic attacks.)

The good news: After diagnosis of APS and warfarin dosing those migraines and panic attacks went away and a series of subsequent MRIs soread out over the next few months and years showed that my brain was healing! (Hint: eat veggies, reduce sugar and exercise!)

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How did the MRI’s show that the brain was healing itself?

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Subsequent MRIs showed fewer and smaller leisons when compared with earlier ones.

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That’s such great news!

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A severe hemiplegic migraine was the first sign I had APS and it left me with weak right arm and leg for over a month. I was advised to have neurophysio ASAP and it worked amazingly. They said that it can leave permanent damage if you leave the weakness too long. Only get them now when my INR is too low. Hope you are feeling better. Neurophysio is definitely important if you are left with any weakness (apparently it is a weakness brought on by the fear/anxiety caused by the severity of the migraine as oppose to permanent weakness left by stroke).

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Hi , I too suffer with Hemiplegic migraine and I’m lupus anticoagulant positive . It took a year to diagnose APS and 2.5 Hemiplegic migraine. I’m on warfarin for APS and amitriptyline for Hemiplegic migraine .funnily enough I have had one tonight , I just take myself off to bed and rest until it passes . It is very scary but I have learned how to live with it .my right hand is weak tonight and pins and needles in right side to f my face , my head is mush 🙈.

Just remember your not a lone . When this all started 8.02.15 the weakness lasted a while , it dose come back . I can do most things for myself now when on a good day . I spent more time in A & E than I care to remember . It was put down to TIA but now there not sure 🙈xx

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Hi Amy,

What INR did you have when symptoms in right side of your face last night? Do you know? I think you were too low in INR.

Kerstin in Stockholm

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3.9 , think I have a bug to and that always makes things worse 🤢

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I test every second day as my INR changes a lot. Is INR=3.9 on fingerpricktest? Do you always have the same value in the vein? Was 3.9 taken yesterday?

Kerstin

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I'm positive for anti bodies but not the syndrome apparently. They found a potential lesion. On my putitory gland so could be cause what I thought aps is as professor doesn't think aps does it all 🤔

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Hi,

You say you are positive for the antibodies in your answer above. Have they tested the 3 antibodies they test for this APS twice with 12 weeks between the bloodtests and they have both times been positive? I doubt in that case they will take the Warfarin away.

Kerstin

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My local haematologist did and was positive both times

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I suggest you get a copy of all your bloodresults at least those which are important to get a diagnose. So you were even positive to Lupus Anticoagulant and anti-Beta2-Glycoprotein1?

Kerstin

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I don't have a clue to what I'm positive for she never said even when I when I asked her she looked at me blank this was my local one so hoping to get some more answers in Feb

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Ask for a copy so you know your medical status. I always get copies of everything since a lot of years back. Perhaps you are not positive to APS as to the antibodies. You have a right to know though.

Kerstin

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Also you know of course that we can have APS only on symptoms, but it is easier to diagnose if we have persistant positive antibodies also. The antibodies can go up and down but once one positive twice it is said to be a sign of APS .

Kerstin

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All I know is she done it twice and came back positive but anything else I don't know. I have all the symptoms but we will see

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I suffer with Hemiplegic Migraines, I do suffer with Numbness on one side of the body which I have an episode. I did have a really bad one whilst out with friend, and did lose my vision and could not see anything , I could hear and was still standing, but had the numbness down one side of the body, at the time I thought was a really bad episode. the site did come back after a period of time, just felt sight was not quite right so went home and rested , after two days I felt like had lost part of the vision etc and went to the hospital, then did various eye test etc, and it come to them telling my I should have gone to see them straight away as the episode was a stoke. I have lost part of my peripheral vision on the right side. am under the Neurology team and was diagnosed with Lupus. am now under the Lupus team at Guys Hospital. Since being on warfarin and increasing my INR reading to a high level, the headache are lot better and not have numbess etc for a few years, if my blood goes to thick I find the headaches do come back.

Hope this help.

Teadonn

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I had hemiplegic migraines intermittently for years before my stroke...they always went away till the last time when i suffered full blown strokes. Be very careful....if headache doesnt go away in a couple of hours if not before seek medical attention. Best wishes

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The professor may take me off warfarin as I have nor had pregnancy issues but I can't have children anyway so not got that far to have a miscarriages.

She had taken a loads of blood tests and scans sent over from my hospital and will see me in Feb. She thinks something else is causing it and I might just have the anti bodies not the syndrome.

They've found a lesion in my brain which would cause all this so we will see

Thank you

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I dont believe you have the “syndrome” until you have an event such as a clot that will/can cause a stroke. Please be careful

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That is what she said and will take me off warfarin which I'm not happy about as I will be ill and susceptible to clots. She took loads of bloods and will see me in Feb

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Ash,

A few question I would like to ask. I think if you can answer them with certainty, then you will not need to ask this professor these questions.

If you have similar questions as mine, perhaps you can incorporate them into your question list you are making for your upcoming appointment.

First and foremost, in what what discipline of medicine is this Professor in? Hematology? Neurology?

The reason I ask is I am clearly hearing this professor speak about very serious issues in two highly specialized fields of medicine: hematology AND neurology. This is a bit of a problem. I’m thinking she is a neurologist. She should not be dabbling in your hematology to the point of withdrawing it, if she indeed is a neurologist.

Professionally, she has a duty of care to you to question the safety of you being on warfarin if she feels your symptoms are due to a lesion involving your pituitary gland.

1. How can this prof be sure that a lesion on or within the pituitary gland was not due to APS?

2. Has she consulted with your Hematologist and Rheumatoligist before making such a decision, provided they are involved in your care?

3. Do you show any sights of other auto immune diseases that often accompany APS?

4. What is her plan of action ( in writing) if you should become ill upon withdrawal of Warfarin. In her written plan, it should acknowledge that:

1. sudden withdrawal of anticoagulation can trigger CAPS

2. professor Hughes stresses repeatedly the importance of clinical symptoms over laboratory testing, and you have both although no clot, if I’m understanding correctly.

3. She might consider prescribing clexane if you become unwell then an urgent referral to Hematologist

4. Perhaps this all points to the fact a hematologist should be pulled into this for a joint decision if this is not already happening.

I’m sure I’m redundant in asking to to have a look at ghic.world/

Post script: I just scrolled to the top of this thread. I read that prof Bev Hunt ( top Hematologist in London) is your prof whom you reference. My apologies. I should have taken the time to scroll up first. Well, I don’t know what to think. My answers still stand. I still maintain my responseses unchanged. However, now I think Prof Hunt might want to consult with a top Neurologist. I’m sure she will before speaking with you again.

I myself see Prof Hannah Cohen and I know she does consult with other specialists out of her field of expertise on matters that affect decision s she need to make concerning my anticoagulation needs and larger , overarching comprehensive view as a whole. Her clinic letters are then copied to London Bridge, and other consultants involved in my care.

I wish you the best of luck. Now that I see you are actually seeing Prof Hunt, I do feel somewhat better about it all. ( but even the top specialists can never know it all. They are over whelmed- and we must never forget: APS is relatively new to the field. It’s variants are many, and it’s in control of the game board, not the patient- and certainly not the doctor. )

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Thank you for your reply. I have severe symptoms of aps. She thought some of my meds were causing it. I'm confused my local hospital saw a lesson yet she saw my scan and said nothing was wrong so I'm confused to whom is right.

She was quite scary nice but intimidating to start with. I'm so worried about coming off warfarin even tho I'm not stable i do get some relief but she dismissed that and said she doesn't think it's aps yet prof Graham Hughes book says it's the same symptoms.

Just because I haven't had a clot and not fallen pregnant I don't have the syndrome yet my local one said I did. She has requested all my notes. She may need longer than 2 months to read them lol took a long time to diagnose it along with other problems. Just don't know what to do

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