I am ultra positive for all 3 antibodies associated with APS. Have suffered PE's and several DVTs. Have also just taken early retirement at 53 from a very high powered job in the City due to severe memory problems and word search issues.
I live in the North West but am also under St. Thomas'. I was advised by St.T's in December, that following an MRI scan, I had suffered a number of mini strokes and this was causing my various issues.
I was referred to a Neurologist near home who was a massive APS sceptic and questions St T's opinion. He essentially felt that a significant majority of APS patients were paranoid with regards to their symptoms and was all but dismissing a number of the significant issues we are all facing, eg, chronic fatigue, feeling ill most of the time etc etc etc. This was not a great start and basically confirms what a number of you have been saying all along, in that we are seriously lacking good empathetic health care professionals who actually understand APS. Consequently, and maybe this has already been suggested, shouldn't we, as a group, be putting together a geographically based list of doctors who fit the criteria?
By the way, I have an excellent and caring Haematologist in Manchester for starters!
Let me know your thoughts
Best wishes
Paul
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I have found most Neurologists seem to be like this apart from the first one, who was the Dr who diagnosed me with APS. My second one was ok but didn't believe that many of my symptoms were due to APS and that I couldn't have TIAs as nothing showed up on the MRI scans. However, the most recent Neurologist doubted that APS actually existed, he had no time for Prof Hughes and said that patients on forums such as this just talked to each other and invented new symptoms; I hope he never gets sick himself.
Hi there, please can you private message me details of your Manchester connection, as we are currently building a data base of user friendly professionals with real medical knowledge about this condition to hopefully eclipse the attitudes of those who are not really helping us. What is it with neurologists. I sometimes wonder if we should tackle their profession at the top! Collectively. Mary F x
Hi Paul, I agree with you. Before diagnosis I saw an endo, rheumi, cardiologist and psychologist ( because of the migraines). Then rheumi said I only had fibromyalgia. The cardiologist told me fatigue was normal as I had 3 kids, though my GP had told him he suspected MS which the cardiologist ridiculed. The psychologist said I needed relaxation tapes.
Since diagnosis by Prof Hughes, I have seen a rheumi who clearly did not like the Prof saying, and I quote 'I knew Graham when he was nobody' and denied I had APS. A haemo who doubted too, said my INR should only be 2 not 3.5, was clearly surprised I still had livido and was only interested in me being anaemic.
Frankly I am scared to raise my head above the parapet for fear of what will be taken from me. I have recently seen the Prof again after hiding for 6 years.
My son has just had a positive test for APS with the prof after being told he should accept migraines by a neuro, told he needed occupational health in his office by a rheumy, and give shed loads of antidressants by a GP who said he is depressed leaving him with serotonin syndrome at one point.
Thanks all for your comments. Sometimes, infact, quite often, I feel that we are on our own with very little support and acceptance from health care professionals such as Neurologists. Great idea MaryF to tackle the Neurologists from the top! Wonder whether Prof Kamashta at St Thomas' has any ideas as to how this can be achieved. I am seeing him again on 22 February so I will ask him and report back!
Please see my answer below. Munther Khamashta is a trustee of the charity and obviously knows about the proposed database. He main interest, quite rightly, at the moment is APS ACTION - international collaboration
If only neurologist would look at people's past medical history and think about it then they may then be able to do their job properly
I had all the symptoms of Hughes syndrome and told him what I thought after I had a heart attack
He was also most insulting about it because he said some people are positive for Hughes and have the ? Antibodies and others do and they don't . So what! My medical history was enough to diagnose me.
I don't know if they are jealous that prof Hughes has a syndrome named after him.
I hope one day that prof Hughes can make these stupid Doctors think
I'm so tired of these doctors who are, basically, quite dumb. All they have to do is look at the tests in front of them. If the tests haven't been run yet, or are negative, then we as patients need get on our - OUR - arrogant behaviors, with dignity and muster and advise the neurologist (or whatever doctor) that they need to educate themselves.
I've been dealing with serious health issues for now 22 years, not all APS, and I've found that perhaps half of doctors are indeed either ignorant or arrogant and not worth the time/money/effort we, the patient who deeply needs them, extends so desperately. I don't think it matters if it is here in the States or in Europe or wherever, this is a problem which somehow needs addressing. Perhaps it is attitude, I don't know.
I don't know the answers but I've stopped treating doctors like 'gods'. Some of them are worth their weight in gold, we know this, but a doctor needs to earn my respect. What I read above here is something none of us should ever have to put up with. If a doctor calls me by my first name, I call him/her by their first name; this brings them down and changes the level. We are worthy people and I, for one, have learned to expect to be treated well. It is not easy, not when our lives are in their hands.... it can become scary, and I think they know it. I am very polite, but at the same time I do my best to act in a way which lets them know I expect to be treated with respect in all ways.
If one is in serious shape this cannot always happen, i.e. in emergency room, and then we are at their mercy. I could write a book. But, one step at a time. This is huge for me. I guess you can tell...... I've gone on about it, huh!
We are worthy, don't let any doctor talk down to us!!!!
I find it so depressing to read stories of experiences like your. It is one of the reasons I tend to come and go here, reading some of the material really gets to me and I need time away.
I like the idea of a geographical list of what would we call them, 'Hughes friendly' specialists?
May I also suggest those of us who know of no such specialists identify our areas as lacking? (Though I have written 'lacking' frankly I regard some services as worse than lacking, downright dangerous with the closed minds.I had a haemo who wouldn't accept a need for an INR over 3, even with a long standing history of events and I ended up with three TIAs on one day even though I was over 3.0 -the only positive thing was that the Stroke specialist ran loads of tests and found a hole in the heart)
For my part, I live in Devon and know of nobody in Devon, Cornwall, Somerset or Dorset to recommend.
Yes, the Hughes Syndrome Foundation charity is compiling an APS specialists database as we speak. It will be made available on the new website soon to be launched.
We have appealed several times to the forum and people have given the names of specialists throughout the UK to us. We research them, write to them to let them know we will be including them on the database and sometimes they confirm or provide new details.
The database now has over 50 specialists listed (both NHS and private) and I am hoping it will continue to grow once it's live, as there will be a form for people to submit any new doctors they recommend.
It is only based on UK APS specialists at the moment. It could develop to include GPs and perhaps the world, but this would be a big undertaking for our tiny charity.
The website is inching near it's conclusion - it's been a labour of love but should be up and running in the next month or so, depending on unforeseen bugs
Kate
If you want anyone included please email me at kate.hindle@hughes-syndrome.org
My neurologist at Addenbrooke's was dismissive as soon as I walked I the door. She criticised everything about my condition - even down to what shoes I was wearing!!!!! Seriously. Very rude and unprofessional attitude, which then her opinion appeared to colour my entire treatment - which wasn't very good to begin with. I am at st Thomas hospital now, and the difference is decidedly marked!!!! Thank goodness. I am in the process of complaining about Addenbrooke's as we speak. I felt belittled and ridiculed. Awful. I was told I was a psychiatric case for the most of my symptoms. Prof Hughes held his head in his hands when I to,d him this and said this was becoming more and more a common response to APS patients. So feel for all the previous posters. A database is a brilliant idea.
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