I have seen a rheumatologist and a neurologist this week - the rheumatolist was great he really understood Hughes and my symptoms and confirmed on my CT and MRI scan my strokes as had my stroke consultant. He is testing me for lupus as I am suffering quite a few symptoms that could indicate APS with lupus. After the consultation I felt so much better that so many of my symptoms could be explained.

Next day, I saw a Neurologist as when last in hospital with a stroke I had been put on anti epileptic drugs and no one know why. My GP was not confident enough to take me off them. Any way to cut a very short private consultation shorter, she informed me that she was 90% sure that I have never had a stroke and the changes were consistent of someone of my age (51). She felt that my stroke symptoms were due to migraines and questioned the use of Warafin. She made me feel that all my symptoms were not real.

Anyone else had this experience with a neurologist?

Meant thanks

16 Replies

  • Hi there.

    Yes, I have had this kind of experience and I walked out of a consultation with a neurologist who said to me that he didn't believe Hughes Syndrome existed and that patients who go on forums like this are just making up new symptoms and pretend illnesses!


  • I am sorry to hear that you have not had a good experience with a Neurologist, unfortunately this is really common, and despite endless progress they still appear in the majority of cases not to get this disease, listen to your Rheumatologist, and perhaps send a friendly email to your Neurologist including the recent debate in the House of Lords, which clearly sets out that there is a need for progress out there with the medical profession, and also the films of our last Patient's Day at St Thomas' Hospital last May.

    1. House of Lords Transcripts:


    Also our charity website:

    I normally find that you can get the secretary's email address and then write with a heading marked for the medical consultant's attention.


  • Interestingly I had the opposite. It was down to a persistent neurologist that I was diagnosed.

  • There is the odd one, but few and far between which is most unfortunate. MaryF

  • Like you, panda, I was first diagnosed by a rheumatologist but he moved away and since then I have found, without exception, that this discipline of consultant are in denial about APS.


  • Sadly I have experienced exactly the same thing.

    I have an incredible rheumatologist who knows this condition inside out. She confirmed my Tia's, understood my symptoms and went through each blood test and scan I'd ever had and came up with a treatment plan and sees me every 4 months. She also has ensured my gp can get in touch with her at any point if they have any questions.

    On the other hand my ex neurologist was completly dismissive and tried to convince me that it was all in my head.

    If I'd listened to my neuro and not been referred to my rheumy I have no doubt that things could have turned out very badly for me. Even after seeing scans and my many blood results he refused to believe that there was anything wrong with me.

    I think sadly it's quite common for neuros to lack understanding of this condition.

  • Many thanks for your response, it is reassuring that others have had the same experience. As sometimes you do feel that you going mad and it is Allen your head


  • My GP put me on anti depressants and sent me to a psychologist. I continued to make appt. with a neurologist that was patient with me. He did find something on a MRI of my brain he couldn't quite identify other than he thought it looked vascular and referred me to my current neurologist who ultimately diagnosed me with Hughes (APS). After many more MRIs and up and INRs all over the place among other things, I have since been put on seizure preventative, for seizures most likely caused by damage from a clot. I don't like taking all these meds, but it helps with the migraine complex symptoms so I can't complain.

  • I had a neurologist tell me he did not believe APS could cause strokes!?! I had another hematologist tell me, good news, you were negative for Lupus Anticoagulant, so you don't have lupus! Both were older docs. The younger ones coming out of school now mostly have heard off and accept the existence of APS.

  • Many thanks for your supportive response.

  • I was sent toba neurologist by my rheumy and he did send me for an MRI. I was jittering all over and couldn't walk into room without help with my body jerking and I couldn't strong a sentence together properly.He said he only noticed jerking a bit and my talking was OK.Later I got a letter saying he didn't need to see me but then my rheumy noticed I had APS. very strange as he said if he couldn't find what was wrong with me me he knew specialists in Harley St etc who he would send me to

  • Hi Dani,

    How unhelpful is that?

    I see neurologists as I have MS as well as APS and other auto immune things. I find Neurologists can be very arrogant and I often leave their appointments upset.

    You've seen a stroke specialist and a Hughes consultant who are of the same mind. Can you ask to see a different Neuro?

    Sorry I can't be more help, but it's not in your head! Well, maybe it's in your brain, but not in your mind xxx

  • Hi Danni33

    Can you please let me have the name of your rheumatologist so I can check whether we have them listed in the APS Specialist Directory?

    If anyone else wants to add their doctor to our list, please get in touch either on here or at the charity:

    Thank you :)

  • Yes I was in hospital in December last year all simtoms of a stroke I had a stroke on in feb last year but this time I was in 6 days and no one was telling anything a neurologist came asked me to get out of bed and walk round then send y can you not walk I send have you not looked at my notes I've lost the feeling of my left leg he never send much just we do more test witch they never done no one can tell wot was wrong

  • Sorry to say the arrogance of neurologists, almost bordering on churlishness, holds true in my part of the world as well (Northern California). I had the occasion to chat with a former neuro about it and this is what he said. Historically, neurologists were faced with appreciably more info that they had to retain in their heads than other disciplines and, therefore, generally attracted the "smartest " doctors. Doubtful whether in the computer age this is still true, but certainly neurologists seem to believe this is still the case=arrogance.

    Bottom line: don't let their egos shatter your confidence. All agree: find a good rheumy. But I would add, ask your rheumy to refer you to a neuro who "gets it." Best of luck.

  • How timely Danni - I am just searching through here looking for info on the same subject -so thanks !

    I have just had an awful neuro consultation on wed and still feeling quite fragile today - partly due to the lumbar puncture i had , but mainly because of staff attitude ! I felt awful after my ct scan and had what i think was a complex partial seizure - possibly i am allergic to the dye used but they gave me the impression they thought i was making it up ! Afterwards I remembered that i had a bad reaction last time too - i think they just must have bad training and see us as bits instead of people - and they do seem to give the impression of not believing us - I think the only answer is to recover and regroup with good friends like on this forum and then maybe get involved in dr training - because a think a lot of the suffering could be alleviated by better approach from medics. Dont worry - concentrate on your rheumatoligist - and hang on to him ! All the best


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