How many of you are suffering at lack of knowledge by neurologists and being told nothing we can do for you.

[sgtraf]

I was diagnosed in 2000 and have had to educate medical profession at every appointment.

I have attacks every now and then and at present cannot walk properly. I am sure there are others out there who have experienced this and would appreciate any advice they may have to assist me in coping.

[MaryF Administrator]

Yes I agree with all said above AND it is pretty strange that neuro's not all of them, but a percentage just do no seem to understand that sticky blood would affect the brain.

I had to go and see one with my son's 15 month and 4 day migraine... they were totally dismissive of APS/Hughes Syndrome, even though I have this, both my sisters and also my young daughter... not rocket science. I am sure we can help you on here. Sometimes you have to go elsewhere. Giving your GP papers off the Hughes Syndrome Foundation site is a starting point. Also perhaps persuading him for a referral elsewhere. A polite education, which of course is something very difficult when you are ill and frustrated, hang on in there and do tell us where you are located. Best wishes - you are amongst people who understand. Mary F x

[InSpain]

I must admit to smiling when I saw your post. I came out of hospital yesterday after a four day stay with a referral to see a psychiatrist because the Neurologist thinks that having an INR of 1.2 has no relevance what so ever to the fact that I am now totally paralysed down my right side and need to use a Zimmer frame. I think his words were, and I quote “You’re having a mid life crisis, you are such a nervous person aren’t you!” I cannot describe the pain I am experiencing, the migraines, the fainting etc it’s just getting all too much for me. Therefore, I have decided to take matters into my own hands and am seeking a private consultation with Professor Hughes so that I can show them his recommendations and the importance of the treatment I need to receive to continue living without becoming totally unable to walk let alone move independently.

[Leigha in reply to InSpain]

Good grief! All this is ridiculous and your post just proves how ignorant neurologists, doctors in general, can be. I had similar experience in hospital but nothing so outrageous as you describe. This is prime example of what sgtraf is posting about! All the best of luck with Prof. Hughes.

[Manofmendip]

Hi All

Well, I was first diagnosed with APS by a neurologist who was very good but he moved from bath to Newcastle. He sent me to a haematologist who, in turn, sent me to Prof Hughes. Other neurologists that I have seen have been very sceptical about APS and the brain.

I saw Prof Hughes again on Thursday and we talked about neurologists and their lack of understanding of APS and the brain. I have been having 'funny turns' for the last year or so, dispite having been on Warfarin since being diagnosed with APS in 2002. Prof Hughes and I both think these are being caused by TIAs but the neurologists won't have any of that and say that they are atypical migraines. Prof Hughes suggested that I change from Warfarin to Heparin and this has made a big difference. The neurologists were all saying how can your 'turns' be TIAs as they always seem to affect: (a) the same parts of your body; and (b) too many different parts of your body each time for it to be a clot causing a TIA. Prof Hughes explained, this week, about 'blood sludging' causing these issues, rather than a single or several clots and this sludging is due to clumping of the platelets, when the negative charge on their surface, which usually repels them from each other, gets damaged and the platelets don't repel each other, so clump together and the blood becomes sludgy and has a poor flow through the brain.

Best wishes.

Dave

[jean48]

Neurology is a not an exact science. I always have felt the neurologists in my life were always strange and nonspecific.