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Sticky Blood-Hughes Syndrome Support
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Seeing my Neurologist

Hi guys,

Next Sunday (26th Nov) I'm seeing my neurologist for my results of my MRI scan I had done back in October.

Since that scan I've had a period of time where my symptoms have got a lot worse and new ones appearing.

I made a list of my symptoms for when I had my first appointment back in August but that list has now grown. I will show the Dr the amended list.

On a slightly different note, I have a common problem where I have tests and they come back clear, leaving me to think it's all in my mind. If this, and I'm sure it will, happens this time how do I go about asking for either more testing or being referred to a more senior specialist? (I'm not good at being assertive and except what I'm being told)

Because saying nothings wrong isn't an option as I know somethings wrong and it's not in my mind.

Hope your all as well as you can be.

Jo xx

8 Replies
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November 26th is on Thursday, FYI. (My birthday and American Thanksgiving.) I know if you are having brain fog issues sometimes it hard to keep you schedules straight.

I hope whatever you find out is helpful.


Yes sorry your right.

Sunday 29th 😊

Hate brain fog πŸ˜”


Hi jojo,

We often have microembolies or microclots or ministrokes with this illness and they are not seen on a Scan sometimes.

But is you hava a diagnose of APS you just have to find a SPECIALIST. The Neurologists do not "get" what APS is about - too thick and sticky blood!! I am not alone when I say this.

The jawpain and numbness probably are TIAs or microclots (perhaps the same thing but I am ot a doctor). Hope your jawpain is over.

I think you live in England and then it should not be too difficult to find a Specialist. Have you looked at Hughes-syndrome.org/selfhelp



Thank you.. xx


I had a stroke and when problems arise I too have jaw pain and sometimes an ear ache on the side that was impacted. My first CT scan was negative and I was sent home before the stroke and subsequent scans after the stroke have been negative yet I have symptoms...YOU AREN'T NUTS...it isn't psychosomatic..hang in there.


Hi Jojo,

I have noticed I gave you a broken link above. Try hughes-syndrome.org/spec

I had a feeling you did not like my answer and I hope you understand that this is our way to help eachother. We have all gone through this and had to fight many times. Some more than others. Some have not had a diagnose but with the symptoms and noone listen and others have a diagnose but not yet an "event" and the doctor do nothing.

Most of us have had a feeling of being "insane" and the doctors shake their heads and say nothing and tell us it is all in our head.

But as Clairann says we are not nuts - we have APS and we need anticoagulation!!

Best wishes to you!




I'm sorry if I gave you the impression that I didn't like your answer, far from it, your advice is most welcome, I was just off to work when I received your reply and thought it was better to acknowledge it than appear to have ignored it.

Any advice from anyone is always welcome.

Thank you again.



Hi Jo,

I was just afraid that I made you feel upset or very sorry as you did not comment on the "broken line" I sent to you. Hope you did find a suitable doctor on the new one I sent to you.

Sometimes we feel depressed and that is not easy to know when we can not hear or see the person.

Good that you feel and you are very welcome.

Kerstin in Stockholm


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