Sticky Blood-Hughes Syndrome Support
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Well Ive been for appointment It was a woman consultant who did know all about

Sneddons so that was good. Had to recite my medical history as she said would take too long to read all my notes!!!!! So I went to give her my history i had wrote down for her but no I had to read them to her while she wrote. After going through all miscarriages/stillbirths,and strokes and all the other conditions Ive since been diagnosed with and the death of my husban 3 years ago her reply was "what a tramatic life youve had you could write a book" ????? So the outcome is I have to have another MRI also had 9 blood tests done (one was for clotting even tho I take warfarin??) and an appointment to see a neuro-psychologist to run some tests as I might be anxious and depressed about my life......This is how I was treated at the begining " its all in your head" . TrIed to explain that I

know these events have happened I dont rember them, waste of time.

Sorry to moan just annoys me they never listen. xx

11 Replies

I am so sorry, my Neurologist was useless, do you see anyone at St Thomas's I have found they are brilliant. I was referred to the psychologist, by st Thomas's for memory tests, she was lovely and had some good ideas re remembering things, most of which I already knew but it made me feel better to talk.

I don't trust anyone else in my care. I think theses days you have to look out for yourself.

I am on antidepressants but while I was on Clexane I didn't feel depressed. I think I have some brain damage in that department as well as most of my brain

I hated my Neurologist so glad I no longer have to see him. I personally think they need some re. Training,

Hope that makes some sense

Take care

karen xx


thanks karen and your post made sense. xx


Oh dear Sharon, what can I say. I think Neurologists are just a breed apart I really do! Dont take it personally its just we really hope that at some point we are going to find somebody, just one person that might be different from the rest.

Cheer yourself up with something nice and think that at least you have not lost anything by going other than time.

I feel I should post a funny video or something at this point but Im sure you can find one for yourself. Chin up! xx


thanks APsnotFab

Think she took so much time taking my history that i couldnt fully explain what i thought was wrong. Guess im lucky because by tomorrow I will of forgotten what she said...thats the joy of memory problems, at least i can laugh about it. xx


Hi Sharon it seems she is at least going to do a further MRI and more bloods for their records - thats a good thing hun ;-) yes your life has been traumatic, like many sufferers we do learn to cope and like you my poor memory helps us not to dwell so i guess in their "healthy lifes" they are actually saying they would be depressed given all what you have been through! but i agree entirely with you they seem to have to put a "label" and dont see the struggle we have when the word depression is used!! when all you want is to be listened too and not labelled!! lets hope she reflects when she see's you next and have the results. Take care kathy xx


Hi Sharon,

I was diagnosed with Sneddon's syndrome by my Neurologist who i have faith in. I Know when i have to see someone else in the medical or other profession, when i say i have aps and sneddon's they ask what it is etc, so now i carry a sheet with my anticoagulant book (which you need to carry around at all times) so i just give them the sheet with dates and also snippet of information for sneddon's and APS, it is so much easier than explaining the condition. Hope things improve for you.



Hi donnab, All my original consultants who diagnosed me have all retired (they where really good) so i have to start over again. She did know all about sneddons but ignored the APS part. We dont have our yellow book anymore they changed it for silly little cards they send to you with your INR result, doseage,next test date. Miss not having yellow book because you could check if there was a pattern. I get tested weekly so I have hundreds of these cards. xx


Hi All

Although i was first diagnosed with APS by Neurologist he moved to the North East from Bath and two subsequent ones that I have seen have been useless. The first one was at least pleasant and did suggest Amitriptyline for my recurrance of migraines after 7 years free of them while on Warfarin. The second one was just awful, miserable, rude and said that he had doubts that APS actually existed and that forums like ours here just encourage patients to dream up new symptoms together; needless to say I don't see him anymore.

Neurologists need retraining in both good manners and APS.

Best wishes.



I am experiencing the same thing.

I have had neuropsych tests and conclusion was I was intelligent enough but my memory was only 25% of normal!

It was suggested that it could be caused by anxiety! I've been labeled this way for years but I KNOW ihave APS because it was diagnosed by Prof. Khamashta. My bloods are positive and my MRI shows lesions, soft tissue damage and nerve damage to my brain.

SO why are my symptoms allegedly caused by aanxiety and not damage?


I'm right there with you Sharon x


I know she asked me do you go out I said not without someone with me due to no pheripheral sight and balance problems....You must be im not........well you must be you dont go out alone!!!!!!!!

At the begining I was labelled anxious/depressed had two neurologist appolgies to me for doubting me.



Hi Sharon,

I'm so sorry for the lousy experience with neuro, when are they gonna catch up and help instead of treating us like this! I haven't seen a neuro yet, I know I need to, but am very wary of there reaction, don't need anymore rubbish from so called educated people.

I hope you can find a doctor, specialist who will help instead of hinder! Keep pushing hon!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


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