Sticky Blood-Hughes Syndrome Support

Sixth cranial nerve palsy

Hi all

Been a while since I have been well enough to come online but I am back

So lately I have had yet another bout of sepsis and intensive care that's twice in six months but I'm recovering slowly

I was wondering I have just been diagnosed with 6th cranial nerve palsy basically I hAve permanent double vision d my heRing loss has got worse my muscles are so twitchy and now I have started to get numb / pins and needles in hands and feet.

The eye affected is the same eye developed optic neuritis in ( I have no MS lesions )

The local hospital said basically we are sorry we know something is wrong but we cannot find out what yours is a very complex case

I'm now at a loss In terms of the cranial nerve palsy has anyone else had this ?

Current taking 14 mg warfarin to maintain INR of 4

Hydroxychloroquine 400mg

Mepacrine 50mg mom, wed , fri

Clexane 120 mg daily

Baclofen 10mg qds


2 Replies

HI, I do hope you are feeling much better soon, I include some papers for your interest to see that this has been reported before: I hope your team are looking after you well. MaryF


I am sorry you are not doing well. I just want you to know you are not alone. Hughes has not affected me like you, but it has affected my nerves to the point I am in a wheelchair. I can walk very short distances with a walker. Don't give up hope. When you are feeling better you need to find someone who work with you to give some help. Someone out there has know how to help you. Keep trying, I do, no matter how hopeless it seems. This website is a good start. Designer16


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