Hello from me

[Fusch]

I haven’t been in the board for quite a while. Have been stable on the usual drug cocktail + azathioprine for MCI. Unfortunately I can feel that things are deteriorating with extreme fatigue after 4pm each day, persistent headaches no longer reduced by occipital nerve block, and memory again problematic along with some anger and depression.

[MaryF Administrator]

Sorry to hear that, as this is a situation that has changed for you, do email or telephone your main consultant to see if you need any tests or tweaking of your medication, don't sit and suffer with it, and perhaps reach out to a dear friend or to a counsellor to help you manage how you feel, sorry you feel bad, I can't wait for lock down to ease a bit, I am sure it is making us all worse. MaryF

[Fusch in reply to MaryF]

Yes, that is true. Though I am back at work tomorrow after shielding (work in a school) and it will be lovely, but exhausting! I have phone appt with Beverley hunt on Tuesday.

[MaryF Administrator in reply to Fusch]

Phew, that is timely, do right everything down, I do, to avoid missing something significant on the day. She looks after me too. MaryF

[Fusch]

That reminds me - eye tests when on HCQ - so they do them at st Thomas’s or do we need to find locally? My optometrist said what’s needed isnt standard at branch level

[WendyWoo50 in reply to Fusch]

I go to my local optician annually (as opposed to every two years) for:the usual eye checks

A field of vision check (which is what is required when on quinine medication).

And as I have Sjogrens too they use fluorescent eye drops to check for damage on the surface of the eye.

Providing you inform the receptionist what you need at the time of booking (I say due to health conditions I have and medication I take I need...) they should carry out all three tests in one go.

I also explain that I need to have the tests every year. Then include it in my diary for next year. And a booking reminder.

I just pay the standard fee; there has never been an additional charge.

I hope this helps. It is more convenient than going to St Thomas for it. These tests are really important so please don’t wait to book them. Good luck 💋 x

[KellyInTexas Administrator]

healthunlocked.com/programs...

This is a very alarming sounding link- please in your own mind take away the word dementia and replace it with Mild Cognitive Impairment.

I got that word from going back and reading your previous posts. Especially the one where you do kindly answered my questions to you three years ago. It was about Dr Mummery (?) and the memory tests, Aza, PET glucose PET scan, Dr Bev Hunt, and Dr Paul Holmes. ( median Tempotal lobe hypo absorption of glucose.)

I was put on Rituximab and am still on very high dose regimen- but have an over lap of cerebral / neurological - come clotting in brain, cerebral manifestations and limb DVT’s .

My neuro cog is pretty 🤦🏼‍♀️🤪and then other days much better. It’s definitely INR dependent, but.... big confusing but... sometimes not.

APS is a real jerk. Loves to pull nasty pranks. Just because it can, or at least that is how it seems to me , and I think a lot of us.

I do have a couple of links for you to look at . I will imbed them here as I find them . There will be two. Check back here to this particular response from me.

Update for you:

frontiersin.org/articles/10...

[KellyInTexas Administrator]

Hello Fusch.

here is the second link. ( the first one I put in the on going comment thread you snd I had previously had going down below, but the pasting of this new link was overlapping .

drugtargetreview.com/news/8...