IVIG and depth perception problems!?
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March 17, 2010 at 12:54 am
One of my first symptoms of this disease has been monocular diplopia (double vision indepenent of each eye). It’s been 8 years and I am already used to that, but, I had a 3 day IVIG dose 2 days ago and since I was released from the hospital, I can’t stop bumping into things! I have scratches, bruises and burns all over me because I am bumping into walls, touching the stove when I think I am at least 5 inches away and so on. I am also having problems typing because I press the letter next to the intended one. Is this a normal side effect? I didn’t have it last time. Oh, and I stubbed my toe 7 times against the same wall thinking it was at least a foot away. Has anyone suffered this as a side effect of IVIG? Please help! I am going to be black and blue by the end of the week!!!! 😮 Thanks!
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March 17, 2010 at 9:56 am
I don’t know if that is a side effect of IVIG. Emily had diplopia & it took massive amounts of IVIG to make it go away.
But I think you should call your neuro & report it. He/she may want to see you or send you to an eye dr.
Kelly
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March 17, 2010 at 10:03 am
Wow,
You are really having a terrible time. Do you get dizzy from the altered vision to? Just thinking out loud, so don’t pay too much attention. Did the hospital know that this was happening? Is it possible for you to see a neuro opthamologist? Sometimes if you call a large eye clinic, they will have one on staff that has reserved time slots for emergencies. Hopefully someone will be along that has experienced the depth of field issue, in the time I have been here (3.5 years) I do not remember anyone mentioning the symptom. Do you have headaches? Did you have a spinal done? Are they sure this is related to cidp, did they say miller fisher or cranial involvement. Just thinking out loud, did they do an mri of the brain to check the optic nerve or for blood clot? Is the optic nerve inflamed, (sign of ms which also causes neuro issues) ask about pappalodema or pseudo papolodema(tumor, or pseudo meaning looks like tumor but is not) Another thing to check with mri is chiari malformation, it can cause balance issues, vision issues etc. Excess spinal fluid could be an issue? Some times there is an issue optic neuritis. Maybe that hughes syndrome I mentioned could be an option as it causes neurological issues and swelling of the blood vessels in the brain. A simple blood thinner could fix that. Maybe it was connected to the ivig regarding that the thickness of the ivig (viscosity) caused an issue w/the blood. Sorry I have no real info to help you but mayube some of the questions can r/o things? Keep us posted. -
March 17, 2010 at 10:08 pm
I haven’t heard of this as a side effect of IVIG?? I got eye pain from the infusion fluids causing swelling in that area but when I went to a 10% concentration it went away.I was told the IVIG may help with depth of field problem but didn’t. Sigh.
Do contact your neuro about this to be sure.I also have the CIDP depth of field issue and went to special eye doc about it. He said it was more of a nuisance than a bother.
I thought I’m paying you $ 450.00 to hear you say it’s nothing?? You try to maneuver having a strange sensation of not much balance/can’t determine where the floor is/ florescent lights make you flinch/bruises all over/breaking the same big toe nail month after month/figuring out where exactly the door knob is/etc. A silly nuisance, huh?? -
March 18, 2010 at 12:32 am
You have just described my life!!!! My first symptom was double vision and depth perception issues. Turns out I had undiagnosed Miller Fischer Syndrome for years which manifested to CIDP. My vision has never returned to normal, but habbit has made life possible again. But this time, O feel I have regressed 7 years and am learning how long my arms can reach!!!! You described my days and they are awful. I contacted my neuro and didn’t hear back from him:( Another thing is that my heart rate has shot up. Resting rate os between 105-115 per moinute. Not too sure if this is another side effect or a reason to get back to the hospital or call yet another dr and get a cardiologist invbolved..,.,……:eek:
[QUOTE=limekat]I haven’t heard of this as a side effect of IVIG?? I got eye pain from the infusion fluids causing swelling in that area but when I went to a 10% concentration it went away.I was told the IVIG may help with depth of field problem but didn’t. Sigh.
Do contact your neuro about this to be sure.I also have the CIDP depth of field issue and went to special eye doc about it. He said it was more of a nuisance than a bother.
I thought I’m paying you $ 450.00 to hear you say it’s nothing?? You try to maneuver having a strange sensation of not much balance/can’t determine where the floor is/ florescent lights make you flinch/bruises all over/breaking the same big toe nail month after month/figuring out where exactly the door knob is/etc. A silly nuisance, huh??[/QUOTE] -
March 18, 2010 at 9:09 am
Hi Florencia,
Rhr is high! Is anxiety a possibility or dehydration? On another post you wrote I asked about Miller Fisher, if you were dx w/that 7 years ago, you have had cidp for a long time. I know of two people who actually can gauge their cidp by their eye issues. Both took loading doses or MORE (Emily) to get it under control. You have to get a new neuro and fight for loading doses or more or have steroids added to the ivig regimen. Don’t take no for an answer. Six week apart doses at a maint dose (the 90g you mention in other post, unless you are 99lbs) Keep us posted. -
April 1, 2010 at 9:07 pm
I too went to a neuro optho and she told me that if my double vision ever became an issue, that they would run more studies….??? I said, “When it becomes an issue”? Let’s see, I think it became an issue when I had to stop working, couldn’t drive, read, couldn’t cook without burning myself, stopped being able to reach for a glass of water without shattering the glass, etc, etc….. Your right doc, so far so good! And that was before kids!!!!! I have since taught myself how to live with the double vision, but the loss of depth perception was the icing on the cake! Double vision AND loss of perception, it’s like reliving when I first got sick 8 years ago! I don’t know why the depth perception became an issue after ivig, but now, it’s back to normal.
BTW: I know how you feel about flouresent lights! Talk about nauseating!!!!!! I can’t sit in a room with them without getting a migraine![QUOTE=limekat]I haven’t heard of this as a side effect of IVIG?? I got eye pain from the infusion fluids causing swelling in that area but when I went to a 10% concentration it went away.I was told the IVIG may help with depth of field problem but didn’t. Sigh.
Do contact your neuro about this to be sure.I also have the CIDP depth of field issue and went to special eye doc about it. He said it was more of a nuisance than a bother.
I thought I’m paying you $ 450.00 to hear you say it’s nothing?? You try to maneuver having a strange sensation of not much balance/can’t determine where the floor is/ florescent lights make you flinch/bruises all over/breaking the same big toe nail month after month/figuring out where exactly the door knob is/etc. A silly nuisance, huh??[/QUOTE] -
April 1, 2010 at 9:19 pm
Anxiety was not an issue. I don’t get nervous anymore when it comes to medical treatments. sad huh? My first symptom was double vision. My docs spent the next 3 years trying to rule out a stroke or CVA. No one ever suspected MFS. My new neuro is the one who suspects that I did have MFS, but since it went undx for so long, it manifested into CIDP. It’s amazing, I finally find a doctor who is willing to dx and treat me, but doesn’t want to fully treat me or give ivig a chance! I am meeting with him on Monday and I am going to plea with him! It did help me!!!!! I don’t want him to take the possibilities of my feeling well away!!!! I have taken steroids in the past but don’t tolorate them well. 10mg makes me crazy and they want to give me 100mg’s! I will end up divorced and w/o my kids, not an option. I am about out of options because all of the meds I have been put on give me horrible side effects! I hope he and I can come to an agreement on Monday.:confused:
BTW: about the weight, double that 99lbs)! 😉[QUOTE=Dawn Kevies mom]Hi Florencia,
Rhr is high! Is anxiety a possibility or dehydration? On another post you wrote I asked about Miller Fisher, if you were dx w/that 7 years ago, you have had cidp for a long time. I know of two people who actually can gauge their cidp by their eye issues. Both took loading doses or MORE (Emily) to get it under control. You have to get a new neuro and fight for loading doses or more or have steroids added to the ivig regimen. Don’t take no for an answer. Six week apart doses at a maint dose (the 90g you mention in other post, unless you are 99lbs) Keep us posted.[/QUOTE] -
April 3, 2010 at 6:30 am
I still have double vision on subcutaneous Ig but I no longer flinch at florescent lights. Some of my visual problems definitely seemed related to the IVIg but not all of them. Certainly the depth perception and double vision have not gone away but the strange auras, colors being a little off, and my ultra-sensitivity to light are gone now. The depth perception is annoying for sure, sometimes I try to pretend I’m an artist and this is the way I see the world. 😮
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