Follow up on appointment with Rheuatologist on Friday 27 Jan

As promised here is the update from my appointment Friday with my Rheuatologist. She is very good and understands autoimmune diseases.

She has referred me as a emergency case back to the Haematologist At Canteberry hospital

I should hear next week if not I have to phone up on Friday and make sure I have an appointment ASAP.

She believes (like I do) now that all symptoms especially the headaches are down to APS and that my I N R must be raised as soon as possible.

She said that I should be having injections as well as warfarin so hopefully things will move quickly now

So I just have to wait now! It's day 31 of the headache from hell - that is accompanied by severe, localised pains. I just hope that something is done before it's too late!

10 Replies

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  • Well done on your progress, and keep pushing and phoning up for this appointment, you may get a cancellation. MaryF

  • Hi,

    I agree with Mary. Keep pushing and phoning!

    I want to wish you Good Luck! Please let us follow you.

    Kerstin

  • Well done Wendy.

    Keep us up to date.

    Dave xx

  • Thanks everyone!

    I've passed some of ur info mendip onto a friend of mine. She has been off work since last April with dizziness and nausea. She has always suffered from terrible headaches and regular migraines. Her GP is finally sending her to an ENT consultant. At least it's something

    Now she is having trouble with thinking and her memory. She is doing silly stuff like putting breakfast cereal in her mug instead of In The bowl. And has to write everything down or she forgets it she put that down to being off work so long and not exercising her mind but...

    I'm concerned she may have APS. What do u think? She has never been seen by a specialist. Her GP won't send her to a Vestibular consultant. She hasn't t spoken to her about Hughes.

  • Sounds suspicious. Could you ask your Specialist what she should do to be tested for APS?

    I do not think it is dangerous to ask her to try baby-Aspirin and see if it helps. Ask her to take it with food.

    Kerstin

  • I think it's worth her being tested for APS.

    I also think she should push to be referred to an Consultant Audiovestibular Physician, like Peter Savundra.

    Dave

  • She is in Kent UK where is he? Thank you 💋

  • He is at The Portland Hospital in London.

  • Many thanks I'll tell her 💋

  • I saw him as a private patient, I do not know if he has an NHS clinic.

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