Update after seeing haematologist specialist

Just sharing information if it helps anybody else. Met a wonderful consultant today who belongs to one of my sisters. She is being investigated for Hugh's Syndrome. I have had a number of small stroke's all leaving some damage and blamed on my PAF, my latest one was while my INR was on 2.7 which by all accounts should be impossible. My daughters have suffered stroke like symptoms too. The consultant took a family history of us all as well as my sisters current symptoms and he thinks he knows what it is. He thinks we all have some sort of faulty blood vessel behind the right ear which is stopping blood to our brain causing the left sided symptoms, but causing damage to the right ear. He thinks somebody in the USA is studying this and is going to get back to us with a name and an appropriate drug that will stop these spasms from happening . Luckily they are only causing temporary damage to my sister and daughters, he does think its hereditary and is excited at finding a solution. It would also explain why the drugs for my balance issue's are not working either. Fingers crossed he finds something.

Wishing you all a happy weekend xx

8 Replies

oldestnewest
  • Oh I do hope so, wouldn't it be wonderful to have an answer and a positive intervention. Crossing everything for you. Good luck and keep us posted.

  • Hi there Poppyseed and aren't you lucky! How on earth did you find him? I do hope thongs get sorted and please keep us in the loop.

    Bob

  • Hi Bob, it was my sister who found him on the web as she was going down the route of finding somebody interested in blood disorders where I was looking at the neurological side. His name is Dr Jecko Thachil, the positive key with this chap is that he is keen on research and also keen on sharing his findings with other specialists who may not be in his own field but equally keen on finding solutions in order to give the treatment to patients that work. It's amazing he did not think twice about using the web and looking abroad for answers too, let's hope the new generation of Dr's coming through are all as keen on solutions like him?

  • What a good find! You must be relieved to think that you may not have had mini strokes at all. It is all too easy to blame anything and everything on A.F. isn't it? Good luck with investigations.x

  • Best of luck with finding a solution for all if you! Please keep us updated. I have a client who might be helped by your research !

  • I will, please do message if you need to contact me, I have been looking for answers for 10yrs, managed to work for 8 of them, but had to go on benefits for the last 2yrs which has carried its own challenge s. So if I can share any experience s that may help somebody else, then I am happy too.

  • Thank you. A client came into my studio and began to describe a terrible night in the Emergency Room, with what sounded like arrythmia issues (she doesn't know I have Afib), when she added that for 15 minutes she couldn't speak. Small stroke declared and she marched out with a promise of seeing a cardiologist. 7 day Holter and nothing turned up, though she has ongoing vertigo problems. I would be curious to hear where your research leads you! All the best in your efforts to find a solution.

  • That is very interesting Poppy

    Wishing you all luck in finding the solution

    Johnny

You may also like...