Sticky Blood-Hughes Syndrome Support
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neurologists letter

I saw the neurologist last week and he has copied me in on hs letter to my GP and the rheummatologist.

Sorry in advance if this is long winded he has listed the following as diagnoses:-


Anti beta 2 glycoprotein antibodies

Cerebral vasculopathy (probably not vasculitis)

Muscle contraction headache



Patent foramen ovale (small)

In the body of his letter he has put that on balance of probabilities he thinks the episode of brachial neuritis was likely to be due to a vasculitis, he thinks my recurrent focal neurological symptoms (what we say are like TIA's) are more likely to be due to a non-arthritic vasculopathy, than an active vasculitis. I do recognise this as part of her lupus illness, on the other hand I do not think the events are likely to be part of her APS.

The difficult we have is knowing how to manage her recurrent focal neurological symptoms which are probably occurring two to three times a month. She was unable to tolerate Verapamil and indeed this seemed to make the headaches worse. I should stress that I think the headaches are likely to be of a muscle contraction aetiology rather than lupus headaches. I note that she actually had a single course of Cyclophosphamide and then rapidly went on to Rituixmab. I have found Rituixmab to be helpful but I have one patient who unequivocally responded to Cyclo but has not to Rituximab. This raises the question therefore whether when she is next due immunosuppressive treatment that it might be worth considering some pulses of cyclo rather than Rituximab.

Turning to the headaches I have said that I will discuss this with one of my colleagues who has experience of using Botox for this type of headache.

Above is pretty much all of the letter and any thoughts/comments would be gratefully received.

Just for a bit more background when I saw him last March he said my headaches were due to a problem with a muscle in my neck and he recommended that I have physio. I did go but at the first appointment she said that there wasn't an issue, I did see her again (I paid privately so that I didn't have to wait cos I wanted to stop the pain) she told me I would be wasting my money going again and she didnt want to see me again and she wrote to the neuro words to that effect.

I am happy to try things to get rid if the daily pain but my thoughts are:

1. Already tried physio for muscle contraction and it did nothing and physio just said it was a bit tense but most people are

2. Botox injections in the back of my head, they're not even going to be for my wrinkle forehead or eyes (ha ha), in the appointment he did point out that I have a wrinkle in the middle of my forehead and that this means I have an over active muscle.

3. Cyclo???? I only had one round (3 pulses) batch in 2009 and it wasn't nice.

I don't mean to come across as critical of the neuro as I know that i have a few different things going on and it must be difficult to work through it all, but it feels like the rheumy and neuro disagree. My INR target is 4.0 (range 3.50 to 4.5) and the neuro says he doesnt think my problems are APS related.

I know this is a long post so thank you for reading it.


8 Replies

Have they discussed closing your PFO? That may resolve some symptoms if small clots are getting through to your head.....


Hi kristina,

After they found the PFO (2009) they said it was too small to cause any issues and that they won't want to close it. The cardiologist said it was more likely that my problems were being caused by either the APS, SLE or vasculitis (which is now queried by the neurolgists who says Its vasculopathy not vasculitis).

Thanks for replying, I have put this on the Lupus and the vasculitis site too as I am keen to get people's thoughts.

Take care



The best of luck with all this. Mary F x


Thank you Mary. I have an appointment with my GP tomorrow and I have a list of stuff to go thought.

Take care

Louise x


Hi Louise,

Pardon my french but in my experience most nerologists are PLONKERS!!!

From what you are saying is that youdo not clearly meet all the criteria for the Neurologist to confirm and instead of saying not sure has done what neuros are good at which is making life more confusing.

My advice is see the GP and maybe it might be worth talking to St Thomas or referral because a lot of people complain of the headaches and sometimes its miss diagnoised.

Just a though let us know how you get on with GP



I would question the size of the PFO.... Remember we are prone to microclotting and I am sure even the tiniest clot could cause an issue if it gets through that PFO.... Have they said the actual size and does he have experience with other Hughe's patients?

Good luck with your appointment and I hope you get some answers!


Hi i to would would question the pfo. I am considering asking about closure of my pfo as my headaches are out of control again. It's interesting that lots of us appear have pfo's as well.


I also had a course of cyclophosphamide treatmeents, they did not work and the docs later decided to try warfarin, I had an improvement and then increased my INR to 3-4 and also aspirin, straight away the "events" stopped.

Had also noticed improvement with an increase of azathiaprine.

You might have to give the cyclo another try, to see if it helps, as for the headaches if they ARE due to muscle spasms you could benefit from a relaxation technique such as mindfulness meditation, aromatherapy massage or something similar. You can get a referal to NHS health psychology, they teach mindfulness meditation and relaxation techniques.


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