Well, I can understand all ‘dimensions’…

September 28, 2007 at 2:10 pm

of the issues [pardon my pun? Could NOT RESIST!] I had my annual eye exam for lenses [or not] about 8 weeks ago, my Optomotrist [who’s up to date on stuff, not a mall guy by any means] Suggested that I come back in another 2 weeks to ‘see how things’ are…on the first exam Vision noticably had changed but not substantially? Second visit ALL things were back to status quo. Surprisingly I [I]think?[I][/I][/I] the changes can be somewhat linked to environmental stresses [tested during a heat wave…got a bit dehydrated] and it was close to my infusions.. Somehow all we experience by way of changes because of infusion..aren’t all really recorded?

I keep such a ‘red alert’ aspect about my vision simply because neuropathies from diabetes and those who have MS have these issues in some way or other on about a 20-25% basis…based on a whole heap of bulletin boards and medical papers I’ve read…We have similar issues.
I know that I was almost totally freaked out with the vision issues, but that alternative causes were ruled out..It’s a small comfort, but a comfort all the same…It’s checked off the list and out of the way. For me the cataract issue was definitely hereditary and at an early age…I’m fairly sure that it had no relation to the CIDP …but w/o family genetic testing it’d never be speculation let alone proven…But then I’ve other issues that I have now, which COULD have been tested at time of either onset, or diagnosis…and could have added dimensions to diagnostics, but at that TIME and place simply weren’t warranted.
Our docs are under enormous pressure to do or go any extra step or mile in diagnoses. And, we do NOT live in any form of test tube environment. The ‘would’ haves or ‘should’ haves are not an issue here…there was no clear reason to test! Damage done, get on with treatment and healing as best possible. Genetic testing is expensive…I’m gonna save the $$$ for testing on things that count in getting relief now. Genetic tests do not do that….it’s simply an indication of ‘possibles’…
Go out and buy a lottery ticket! Far cheaper, with better odds and less potential [insurance liability] consequences…
PS: OF COURSE any eye doc isn’t gonna be ‘familiar’ with PN and the consequences! But, if you link analogies to such as diabetes or MS I bet you will get more ‘respect’…vision issues in PN are, I believe in the ‘autonomic’ category, not either the ‘sensory’ or ‘muscular’. Ergo If You help make that ‘mental leap’ connection or whatever you could get a lot further…Hope this helps.

After cataract surgery over a decade ago, all was fine.. I read and read voraciously! Since I acquired CIDP, I have not read or finished any book in print…it’s been a long time. I’m grateful to the internet, as I can read and ‘register’ the ‘screen’ just ‘fine’ – the PAPER i have problems with. Many PN GBS and CIDP folks on boards such as this ‘note’ the ‘reading’ issue as a problem…at first I attributed it to the meds…my problem did occur before the meds came into play tho..so I’m thinking it’s part of the diagnostic symptoms, tho never listed as such.