I don’t think that my own ‘eye issues’ were …

January 15, 2011 at 7:44 pm

totally related to infusions! I’d been having them often and for some times, extended periods. It’s just that they ‘appeared’ to be worse after those particular infusions [at the time?] The combo of pre-meds and ‘changes’ by the hospital I was at were unknown to me, UNTIL I iquired further. I would have, as the neuro-opth. called them – 2-7 ‘eye events’ a day! And the only way to detect them was a distinct change from your normal eye dilation AT the time of the events. As I also said, these ‘events’ did subside..to the point where I have them only 2 days a week and at that? Their severity varies, tho not as bad as at the beginning. Pupils either became super dilated or pinpoint on their own. And, are noticable, once you begin to LOOK at your eyes.
It is now simply a ‘red alert’ type of happening when/if it does happen. But, be aware it can and DOES happen. Maybe, tho I’ve not clue? There mite be a link between infusion brands, plus rates plus pre-meds that all precipated my eye problems. Or, it simply be some sort of ‘internal war’ between the IG and the immune system. I tend to believe [instinct only] that it is the latter.
I don’t know about anyone else here? But losing any OTHER senses [in addition to touch] can be frightening and beyond! Because it IS. Be honest.
Add to the mix the meds we are often on, those that affect hearing, taste and smell particularly. They are to help us, but they too have consequences.
At least I CAN SEE! And I CAN FEEL somewhat, tho distorted! For anything I can achieve? – I am grateful to the IVIG for keeping other potential demons at bay!
LyonsDen? At no time did any of my doctors indicate that I should be taken off IVIG! Pre-meds, daily meds, and infusions were all assessed in detail after this problem arose… My eyes were examined by top eye specialists and heart and vascular as well…all clean. So sometimes? Know that our bodies are protesting to ‘SOMETHING’? You will have to listen to yourself and sort out which whats are the culprits! I truly hope you find your answer.