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Sticky Blood-Hughes Syndrome Support
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Another trip to the Emergency room gone bad...

I landed in the emergency room this morning. I was sitting at my desk reading the computer screen and BAM...felt like someone just came and pushed my forehead as quick and hard as they could. Of course...no one did. I felt really strange for a while. Realized my right leg was going numb. Got up with the walker and thought to walk it off...but I couldnt walk right..it was dead numb. Called the docs office...sent me to the emergency room.

They run the battery of tests...come back in and say well...your INR is fine...it is 2.2 so even if it was a TIA you should be good.


I explained what my doctor was thinking that coumadin doesnt work for me...coumadin failure...and he said that everything looks ok. I am so beside myself. He said looks like my leg just fell asleep more than it usually might.

I explained about Hughes/APS....needing a HIGHER INR...and if not I have these symptoms...and if you arent going to allow it higher than do something for me!!!!!!!! They discharged me and said if the symptoms get worse to go back....I told them if I was dying I wouldnt go back.

16 Replies

My heart goes out to you and I wish you all the best!!!!!


I feel your frustration.....i have had multiple clots and tia's and strokes and PE's....but still test negative for APS on numerous occasions.....you have to stand up and scream at the medicals....if they dont understand the condition tell them to go google it and to come back when they no what they ate talking about!! Its hard as to know more about a condition than the doctors can make them rather stubborn......just stick to your guns......as for your INR push the point...I had too and it paid off. ..Keep well!


I too share your frustration as I'm experiencing very similar reactions.

We are in such a vulnerable position, we need their help but we get none. If we make too much noise they might just say we are crazy and dig their heels in and make it harder for us.

I just wish we had a magic wand to cast a spell on the lot of them and make them understand and help us.



I am sorry that you are having such an awful time with this. Please do download some of the papers attached to the Hughes Syndrome Foundation site and also I know it's drastic but I have actually purchased some of the books and handed them to medicals involved in my family's care as tactful presents. I hope this improves. Mary F x


I am so sorry Pumpkin that you are suffering such alot of anxiety when unwell! - great advice from Mary!

I have recently moved house but not yet changed GP's because my GP has been fantastic since my Dx - But when I move over I will follow Mary's advice.

Keep well - sending warm hugs and a smile

Lesley :)


So sorry you are suffering hun, you really need to convince then to higher your inr, I know they dont like to as ' it is on their heads if we have a bleed!' but if you could convince them by contacting St. Thomas' in London maybe? & get them to asure your doc' it's the right thing to do maybe? they may see you may benifit from a higher inr....

Let us know how you get on, thinking of you xx


Hi Beverly (Pumpkin)

I'm so sorry that you are having these problems.

You are really having simlar incidents to me, this sense of being pushed by someone, which, in me, is followed by ringing in the ears, dizziness, unsteadiness and a sense of weakness in my legs, numbness and tingling in my tongue and fingers too.

As you know I am doing a month long trial of coming off Warfarin and using Heaparin shots. I been doing this for a week with no real difference in my 'funny turns'. My GP is sending me to a TIA clinic now.

You INR issues are a big problem for you and, like many on here, you need to have a target INR of around 4.0, in my opinion. I still think that you should try to get to see Prof Hughes.

Very best wishes and hugs.



I'm so sorry to read this Beverly. I wish I had a magic wand (again.) And as I typed this I found myself wondering over my selection of "magic wand," -- and then I realized what I was telling myself (and you.) Reason should work -- especially when talking with a scientist. And that's what makes it so frustrating -- they decide YOU are the irrational one so they give up with the whole communication thing. And that is frustrating. Again, I wish I had a magic wand.

It may indeed be time to seek a "higher medical power."



My heart goes out to you - what is wrong with these doctors - i too can relate to not being taken seriously with symptoms because my inr was above 3 but did eventually get aspirin added & a higher inr range...

it is so hard to get all doctors to understand because we dont fit neatly into their textbook answers but all we can do is keep on armed with evidence & recent research findings - i just sent Prof Hughes recent blog to my consultant neurologist - he may or may not appreciate it or find it useful but at least no one can stop us trying to educate & keep the medical profession updated

keep believing in yourself and if you need to go again dont suffer and risk any permanent damage go to er as often as you need to to get listened too - you know your body best and i just prayer and hope you will get properly assessed soon - much love kathy xxxx


Hi, Pumpkin.

You have to be brave and stand up for what you need, regardless of the dolts that try to tell you otherwise.

As most of us have experienced this type of pathetic behavior before ( and, yes even here in Australia) it is not uncommon for the exact type of response to occur with frightening regularity.

We have done what Mary suggested and purchased a copy of Prof.Hughes book and given it to her GP for some understanding.

I agree it's a bit drastic considering the cost, but what else can we do?

I wish you well for the future and gentle hugs as well.

Wayne L


Thanks all...been a rough day. What particular book are you talking about that Professor Hughes has published. ? Do you have a title by chance???

THanks....I will do what I have to.

I realize I might need to change doctors....but that is soooo difficult to do.

Very emotional today....love to you all. <3


Hi, Pumpkin.

Try the Amazon .com site and I believe Prof Hughes has a new book just been released this year.

If it's as informative as his previous collaborative books have been, it should be brilliant.

Also, have a look on the Foundation website, as it may be there as well.

Hope this helps.

Wayne L


I did purchase a downloadable version of Professor Hughes book for medical students...believe it is 50 or so pages. It has general information but I am looking for much more in depth. I will keep looking though..

Thanks Wayne.


When will some of these doctors learn that we have different but important needs? Hope you have some joy soon.

I have had multiple TIAs when my INR was over 3.0 When other docs mention that my INR target is high (3.8 to 4.0) I point this out and they usually back off.


Hi Pumpkin have a look on the shop on the Hughes Site they have a number of books for sale


some writen by prof hughes others by patients have a look



Thanks Paddy...will do. :)


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