You have been dealing with this problem a lot longer than me—Mongo. I have just been having eye problems since November. It really helps to discuss these problems with other who have dealt with similar problems. This week my eyes feel weird like they are sore and are trying to go in opposite directions. People have made comments about me looking tired. With the drooping eyelids I look like I am tired. As I mentioned, I have been off of IVIG since January 29 and have noticed a deterioration all over. I go back to the Neuro next Monday for repeat MRIs. I am anxious to see what he thinks about it. I had resigned myself in being crippled for life, but I did not realize that I would be dealing with eye sight problems too. I associated that with MS, not CIDP. Oh well.

After I experienced the eye problems during the Christmas holidays I made sure that the eye doctor shared all test results and information with my neuro. I met with the neuro while getting the IVIG treatment in late December. He said that he had never had a patient with retinal swelling and hemorrhage around the optic nerve related to the IVIG treatment. I have had no pupillary changes. I only experienced a slight blurriness in my vision and did not realize anything serious was happening to my eyes. The neuro temporarily stopped the IVIG just in case it was related to the IVIG. Last week I had a followup appointment with the eye doctor and can happily report that the swelling had subsided and that there was no bleeding noted. No treatment was given for my eyes and I had had IVIG a couple of weeks before. The eye doctor concluded that the IVIG was not the culprit. He is now thinking that it might have been caused instead by the “disease” process—ie….the CIDP!!!!! I told him to please share this information with the neuro since he took me off of IVIG because of the eye problem. No word yet from my neuro. I was taking IVIG every four weeks so I am not off of the schedule yet. I am really concerned that I will regress if I do not go back on IVIG, but the neuro wanted to see what happened if I stayed off of it for a while. Since starting IVIG over six months ago I have only had minimal improvement…nothing dramatic. It is very frustating and expensive but if I had not started IVIG I might be worse off right now. I am also due for my yearly brain and back MRI. We will see.