Left side Face, arm & leg went numb - not convinced a&e have handle this right

[Charts]

I was awoken early hrs with my left side of my face going numb, then went into left arm and leg. My face just felt numb and I was talking weird. This in my face stopped after about 6 mins but still a little numb until next afternoon. My mum phoned ambulance as she was concerned about a TIA and they said 7-8 hrs for ambulance and suggested taking me to a&e. So I went spoke to a nurse to give brief description about whst happened, told her I have antiphospholipid syndrome (didn't have a clue what it was) so spoke to no doctor and she took my blood which was for infection (no blood clot test) and also ecg. Seen a doctor when blood results came back, he said bloods negative so he's not concerned. I said so no clotting test considering I have aps, he said well no as you have said about any symptoms pointing to that (well I haven't seen a doctor to even tell them what happened). He did some neurological testing to test my strength which he said was ok, which was not true as my grip is weak and pushing my left foot up was a struggle and my foot was shaking when trying. I just don't think they handled that the way they should have given my circumstances having aps and im high risk for these things. He said ill pass you on as an outpatient. I just hope it don't happen again as it was very scary and what do I do next time just accept it happening and not see anyone. Don't feel safe at all here in the UK and our health system. Suspected TIA 7 - 8 hrs for an ambulance!

[MaryF Administrator]

Hi you were completely right to go to hospital, and it sounds like you were not assessed in detail, if you feel ill again, go back and take somebody with you, and have information about Hughes Syndrome/APS ready to show them. Insist on having clotting tests! Do not sit at home if this happens again. Let us know how you get on. If you have a consultant managing your condition please email them, (if you phone their PA, and use their email address), they can forward it for you. Mark it urgent and explain what has happened. MaryF

[Charts in reply to MaryF]

Yes I will go back if it happens again. The doctor I see about my pots syndrome also deals with strokes so my mum phoned his secretary and heard nothing back! For some reason because I've been diagnosed with non epileptic seizures they all talk to me like all my symptoms are stress/anxiety related even though I don't suffer with anxiety. They haven't got a clue how aps can effect you neurologicaly. But for me its answering things that I once had no answers for.

Do I have to have symptoms of a blood clot for it to cause a TIA? Or can you have no clotting symptoms and still have a TIA.

[HollyHeski Administrator in reply to Charts]

Your Mum is right, you need to speak to your APS specialist - ask her to keep ringing or send an email explaining what's happened and happening.TIAs are mainly caused by blood clots or small bleeds yo the brain.

'I have read that sometimes a TIA can be caused by a sharp drop in blood pressure that reduces blood flow to the brain. This is called a "low-flow" TIA. It's less common than a TIA caused by a blood clot.'

I have had 2 major strokes and many TIAs, not all caused by blood clots or sticky blood. Some was from tissue off my arterial wall.

Your question can only be answered after proper testing, hopefully from your specialist.

Keep trying to get hold of your specialist.

[Charts in reply to HollyHeski]

Funny because I have got low blood pressure, just can't get it up. Im on midodrine, hope this is not causing me problems.

I can't believe you've had 2 major strokes. Im terrified

[HollyHeski Administrator in reply to Charts]

Hi, what I'm trying to say is that your symptoms could relate to any of your health issues, medications etc.You've done the right thing in getting looked at by the hospital and I see you have an appointment this month to see a specialist.

Stress is also not helping but understandable, maybe talk all this through with your GP?

My CVAs were over 20 years ago now, undiagnosed APS at the time. I'm as good as can be and on the right combination of meds.

Many of us have had a struggle to get a good balance and right specialists but very much worth it in the end.

Try and stay calm and positive - we are not medically trained but do have personal experiences so we are here to support you as much as we can. x

[MaryF Administrator in reply to Charts]

Please make sure they look at your B12 levels and also your Thyroid, both can be low and cause extra problems with circulation, I was not prepared to be diagnosed with 'Fibro' I went off and ordered my own private tests and it all showed up. the-rheumatologist.org/arti... MaryF

[HollyHeski Administrator]

Hi, you have done everything right and if it happens again go back to A & E.I have read your last posts, have you been diagnosed with APS and seen the rheumatologist yet?

If not, try and get an earlier appointment and/or see your GP.

[Charts in reply to HollyHeski]

I've got an appointment on the 28th June. I haven't been diagnosed yet I've tested positive for beta-2 glycoprotein 3 times.

[GinaD]

I too had a history of non epileptic seizures and also, my TIAs were dismissed. On a gurney in an ER after left side paralysis ( still ongoing at that time) I overheard the ER doc in the hall dismissing me as " a nut case concocting these for attention." Sigh. Stay strong and be persistent!

[Charts in reply to GinaD]

Thanks for reply. I'll keep fighting!