Has anyone with PBC ever had a TIA or mini stroke?

Hi I was diagnosed with PBC 10 years ago and went from stage 1 to stage 4 (End stage) 4 1/2 years ago. I am on the list for a liver transplant but not sick enough to be a priority at the moment. I battle through most days and try not to let it get me down. Then came this!

On Sunday night after a big day, I helped my husband weed a little bit of the garden then we went out to a tapas bar with friends and listened to an awesome singer then out to dinner before heading to the airport to pick our son up, he had been holidaying in Bali with his girlfriend. We finally got to bed at about 1.30am so I'm unsure if what follows was caused by fatigue or not?

I got up not long after getting to bed to go to the toilet and I had a little black out then I was slurring my words but it was quick and I was back to reading the thermometer so my husband wasn't too concerned. We went to sleep for about an hour and he awoke to me slurring and rambling on, he was yelling my name to wake me up but I want responding. He quickly called the Ambulance and they sent one straight away, first of all came the Mica Paramedic then a regular Ambulance joined him. I have no recollection of any of this they put me in the ambulance and on the way to hospital I could hear them talk but still couldn't form any words about 1 1/2 hours after our arrival at the hospital I felt my head clear and I said I think I can talk again.

This was terrifying especially when I could hear them but not talk.

I saw the Professor at the Liver transplant clinic today and he doesn't think they are related but maybe the stroke I suffered was caused by sticky platelets going to my brain? I now have to go through more testing at the stroke clinic to hopefully find a reason this happened.

They couldn't give me some drug that they normally would in the first 2 hours because of the oesophageal banding I have had and 2 were only 2 weeks ago. He won't even give me asprin.

Does anyone have a similar story?

looking forward to hearing from you.

11 Replies

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  • There is an autoimmune disease called anti phospholipid syndrome that can cause TIAs and strokes - it might be worth getting checked for this.

  • Thanks do you know if that related to PBC Keren?

  • Only in so much as it's another autoimmune disease, and once you get one, you're more likely to get another.

  • Thanks I googled it and it sounds very interesting I will ask the stroke clinic.

  • I have been wondering this myself as all types of strokes run in my family. I have not had a stroke but it has been confirmed that I do have 'a blood clotting defect'. I'm 34 & was diagnosed at 30 with PBC, hypothyroidism, and this all within a few months of each other.

  • Thanks mb309

    Hmmmmm they were thinking my platelets in my blood were too thick and sticking together going up my Corotid Artery in my neck and blocking my brain. Only a week before I had a huge vein bulging in my leg and they thought I had a DVT.

    Maybe we are more susceptible to all auto immune diseases.

    Keep well Julie

  • Hi Julez1961, I had a TIA in 2005. In 2006 I was diagnosed with Tempoal Arteritis(giant cell syndrome) it was just after being on massive doses of steroids that my GP started asking how much alcohol I drank my reply was none. A new doc started at our surgery 3yrs ago and sent me for loads of tests, this was when I was told I had PBC May 2013. I have recently been on steroids again for Temporal Ateritis. I was told none of them are related.

    Best Wishes Sue

  • Thanks Sue ( highwood )

    I have just looked up temporal arteritis on Google and it seems to be related to an auto immune response maybe it is related to PBC liver disease in some way.

    I have to see some more specialists from the stroke clinic to hopefully get some answers. I have had a Corotid Artery Ultrasound but am waiting on the results.

    It has been over a week now, but I still feel tired and confused in my head.

    I can't take asprin or blood thinning medication due to the oesophageal banding I have had due to varices.

    I will mention this at my next appointment.

    Thanks and I hope you are feeling better.

    Regards Julie

  • how are you feeling Julie. I have stage 1 of pbc. I am 43 years old , I was diagnosed a year ago

  • Hi

    Feeling better today, but I need to be mindful not to overdo it when I feel better. I own my own hair salon and went in today and redid the window display. Then coffee with a friend, food shopping and home then felt like I was going to faint.

    Slowly slowly!

  • Hi all I just thought I would let you know they now think the TIA's I have been having (4 now) are due to the fact that I am now a diabetic.

    Liver disease can cause diabetes and hey why not! we haven't got enough to worry about

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