Why do they immediately blame the IVIG infusions? Could it be the CIDP itself & not the IVIG treatment causing these eye problems?

I have seen my opthamologist more times in the past 5 years than I care to admit. It all started when my vision started getting blurry & I was dx with cataracts in both eyes. This was due to the large steroid infusions I was on for 21 months previous to that for CIDP. In Sept of 2004 I had cataract surgery on both eyes, two weeks apart. No problems with the surgeries in either eye.

Then last December I noticed flashing orange in my peripheral vision in my left eye, also lots of floaters. A few more visits to make sure it was only vitreous detachment going on & not retinal detachment. Then a few months later I went through it all in the other eye. Now my 20/20 distance vision is starting to deteriorate, back to the eye doctor, may need distance glasses in the future. This all happened because of my CIDP, but I never, ever had any pain in either eye. I don’t think this is normal & would keep on top of this. Also, I don’t believe it is related to CIDP, have never seen anything posted about eye pain before?

In thinking about eyes, since this seems to bring a lot of frustration to me and to my neurologist–me because it is so important to see especially if I can not move like I used to do and to him because it does not fit into what this disease is supposed to act like, I have wondered something different. I think that eyes muscles are not weaker or more affected than other muscles, it just is that people have incredible sensitivity to movement in the eyes. This means that even a little damage can make a big functional difference. There is no other muscle set for which the two sides have to work together so very closely. If there is a little damage on one side and a little more damage on the others, it is really hard for the eyes to track together or respond alike. It is like having a fine instrument calibrated with two fine springs and then having rust or damage throw off the matching of the two so they no longer work together like they used to. The brain likes things to be constant especially with eyes. Our condition is further complicated because during the course of the day or over days, the balance may shift further so there is not a steady new way to which the brain can adjust (like when you get new glasses).
I also wanted to say that in thinking about this and other autoimmune diseases, there are many times different protein (antigens) which are attacked on the myelin sheath or nerves. The distribution of proteins is different in different nerves and this may be part of the reason that some people has involvement of some areas of nerves and others not. Some of us have a bad antibody that attachs a protein found in peripheral nerves and in the cranial nerves. Others may have an autoimmune antibody against peripheral nerves and autonomic nerves, etc. The course/severity of the disease probably depends on the antigen, the amount of antibody (titer), the stimulus to produce the abnormal antibody, our bodies inflammatory response to the presence of antibody, and our sensitivity to the changes.
All of what you say Julie fits for this as well and it seems true in this variable disease.
With Hope for cure of these diseases and more understanding so that we do not feel crazy because of them before that.

Hello Paul,
I don’t know if anyone else has vision problems as severe as you, but I do believe CIDP effected my vision. I’ve had more then one cataract surgery on my eyes and I still get floaters. I used to see silvery looking things out of the side of my eyes.

my eyes were the first symptom i had so i guess i am preoccupied with them. I have noticed that when I am tired my pupils will be uneven – and i mean a huge difference in size. I know they were constantly checking them in hospital. I know equal and rqactive is normal so what does unequal (but i presume still reactive) mean?