Sticky Blood-Hughes Syndrome Support

should I be working ?

Hi, im attempting to write a post again (2nd attempt) Im totally new to this.But i cant find any advice on working. I am a Self Employed Driving Instructor. My APS has dragged on for nearly 2 years, but my Drs and Neurologist dont seem to know much about it. The only reason they found out there was something wrong was me constantly going back to the Drs giving them a list of symptoms. Each time they would take blood tests, and each time they were coming back wrong. But until a Locum Dr sent me for further tests and scans ( 4 months later ) They then found out i had, had 3 Tias and 1 Stroke. So i then had to have Lumbar Punctures , they then decides i had APS. But i have seen the Neurologist " several" times , he has put me on Warfarin. But my INR at present varies from 1.4 - 2.1. But nobody seems concerned, all im told when i query it is " as long as its between 2 and 3 " I went to the Neurologist last week which confirmed my thoughts about my local Medical Experts . Apparently the aches and pains are just in my head, his words were " if you think about your bum, when you are sitting on it, then you can feel it " He asked if i was still working and seemed suprised when i said i am going to have to quit my job. I have no confidence,memory loss,repeating myself etc etc. Which i dont think is really any good what so ever, for teaching.

Do other readers think i should stop teaching totally. At present i have 5 pupils that have their tests booked for this year. But i am unable to handle the stress and hassle of a New Driver. I tend to only teach one or at the most 2 pupils a day on a Part time basis now,and it leaves me exhausted.

I live in the North of Scotland.

11 Replies

Hi, I am so sorry to hear your story. I recognize so many things in it. So many of us have been in your situation with a doctor that tries to treat this illness but do not know what this illness means at all. Neurologists, we have found, do not understand APS so well.

Your aches and pain are not "in your head "I can tell you. It is reality. Never doubt that.

It is good that you have a diagnose! Now you need an APS-Specialist. Believe me, that is very important.

Your INR is too low and probably therefor you still have those symptoms.

Scotland and England are not seperated (!) so look at Hope you can find a Specialist in your area or someone else here can give you the name of a doctor that knows APS.

Please let us hear how it goes for you and you are welcome back if you want some more help or info.

Good Luck from Kerstin in Stockholm

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Thankyou for your reply, i was starting to think some of it was in my head ! Although Scotland and England are still together,its a seperate NHS. In England they pay for any item on a perscription. In Scotland they dont pay. So i " think" i would have to find a specialist in Scotland. Not that i mind, someone who recognises APS would be a bonus. I have to go to my GP again on Tuesday, so i think i will have to ask about seeing a specialist. Thanks again. If i get anywhere with them , i will let you know.


Sounds good but remember it must be an APS-doctor.

There are other autoimmun disorders like Sjögrens, Lupus and Thyroid connected with APS sometimes so therefor it is so important to see a specialist who knows the different symptoms and who can see the connection between them.

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Hello and welcome

Please have a look here for a specialist in your area:

It is very important that you have a consultant who knows about APS. Many of our members have to have an INR around 4.0 to feel reasonably well.

Good luck and let us know how you get on.

Best wishes.



Hi, I should say that at the moment you are not well anticoagulated at all so try to get an APS-doctor as soon as possible. I know you will feel much better and can continue to work with your pupils when you are getting the right treatment and correct anticoagulation.

I selftest and my therapeutic range is between 3.0 - 3.5. Most of us feel better when the INR is over 3.0 or a little more.



Hi totallysick, i have been exactly where you are-things can get better.

It would good for you to find a specialist in order for you to discuss the concerns of your condition properly.

Your inr is fluctuating. When i was on warfarin i researched into why this could be. Although alot of folk on this site have good inr clinics and they receive advice. Try and reduce the amount of vitamin k food you eat, this can interact with your inr. Food such as brocoli, spinach, avacodo, there is a list on the hughes website. This should help for your inr to increase from 1.4. I am not medical expert and you do need to find an aps specialist. Once your inr is stablised you will feel start to feel better.

If you are feeling particularly poorly rather than stop working, would it be possible to take a weeks leave to re charge your batteries?

Good luck with it all, stay strong and keep positive.


We do not have to avoid K-vitamin rich vegetables but we have to eat the SAME AMOUNT of them to keep the INR steady. It is important for us with those vegetables. This you must discuss with your coagulationspecialist. If you eat a lot of K-vit rich vegetables you also must increase the warfarindose.


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They have started on right path with warfarin which is what you should be on with APS following a stroke, but as others have said they probably need to up your target range. You also need to ask your current medics what they want to do when your INR is below 2, ie not really anticoagulated. If mine goes below 2 I have to inject with Heparin until it goes up - if they don't do anything then they are putting you at risk. There are lots of good articles about APS and it's treatment which you could read and share with them - you can probably access some on the Hughes Syndrome website

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I have encountered a smorgasboard of doctor attitudes in my road to, and since, diagnosis. Some treat me, others treat me as if I were a nutcase. There is information out there somewhere that autoimmunity is somehow produced by a person who worries too much. As I have posted on this site before: if I am capable of creating my own TIAs/ mini strokes, would someone please tell me how I do this so I can patent the process, and by so doing make a fortune out of people wishing to delay exams and skip work?

Sounds like your neurologist is in the latter category.

And yes, as a stroke survivor myself I can attest that it is important for your health to relax and not stress out over having this disease. But not AS important as receiving the pharmaceutical treatment you need. And with mini strokes and TIAs in your treatment level will probably need to be a bit higher.

AND you need to, as said earlier in this thread, sort out any autoimmnune overlap that may be occurring.

I myself live in the States -- West Virginia to be exact. And I had to journey to a more popular, neighboring state for my diagnosis. This was after 6 months of "panic attacks" which my local docs attributed to my being obsessive about my health. Finally a local neurologist (not all of them are insensitive) ordered an MRI and -- it revealed dozens of white spider web looking thingees which I was told was evidence that what I had been calling "panic attacks" were actually mini strokes.

And should you work? -- Well, it is possible you should not. It is hard to self evaluate when stroke damage is concerned as our brains often do their best to conceal from itself the extent of damage or disability.

II developed a hole in my visual cortex and balance issues and I did avoid driving for around 6 months after the warfarin put an end to the panic attacks. I still have a hole in my visual cortex and though I can drive just fine now, bifocal glasses do not work and I need 2 pairs of glasses in order to read well and hike without missing a random rock in my path.

I'm glad you have a diagnosis but I advise that your next step is to find your therapeutic anticoagulation and treatment level. We're all different and many of us have a theory that what today is known as Hughes Syndrome/APS will someday be chopped up into this or that sub-grouping depending on which step in the clotting cascade angers our immune systems.This would account for why some of us do fine on warfarin, others on heparin, others on frogmen or Clexane -- we're all a bit different in how the disease manifests and so it is of vital importance to be treated by a doctor who has experience with our disease.

Good luck and let us know how it goes!



I live in the US so my info would probably not be helpful....Autoimmune Disorders are considered a

"disability" if the symptoms interfere with daily I retired from my full time job..I could

not predict when I would experience weakness and fatigue...but over the years with appropriate treatment

Aspirin 320 and Plaquenil...and a less stressful job....I find I can work 20 hrs a week...of course

I am 66 years old...

I do have a strong opinion regarding your MD's statement "If you sat on your bum ..."etc. I am a licensed

medical professional and this was inappropriate.....dismissive and condescending....!


Sorry I haven't read all the above, but I know I am better with an INR over 3.5 I had to give up work, I got ill health retirement from work, I can manage on the small amount of money with my Husband as well thank goodness I have someone else, don't how I would manage if I was on my own.

I know stress makes me worse, so really glad I gave up work


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