Eye paralysis & CIDP
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July 11, 2006 at 7:26 pm
Has anyone else had eye paralysis with CIDP?
My daughter’s right eye becomes paralyzed during a relapse. It was almost perfect back in April & May, then she had a relapse. It’s at only about 75% and not getting any better. It’s maintaining though.
We saw her neuro today & I asked him to increase her IVIG to 3 times a week again for 1-2 weeks because I believe that she needs a boost to get her eye back to normal again. He refused and says that she needs to use the muscle more. “Umm…it’s her eye. She uses it all of the time.” was my response. He doesn’t understand that it’s paralyzed & CAN’T move to the right all the way, no matter how hard she tries. He then gave me a speech about how dangerous IVIG is & how uncomfortable it makes him that Emi is getting so much of it. My response was “Tell me about it. It scares me to death but I just want her to be fixed”. He said that this may be as good as it gets but I don’t buy that. I’ve seen it better & I know it can get there.
He wants me to wait until we see the eye dr this month & see what he says. In the meantime we have to go back to patching her left eye so the right eye has to work harder.
I was just wondering if anyone else had eye involvement & what it took to get it back to normal.
I guess I’m just feeling a bit discouraged right now. I feel like if we don’t get her eye perfect then this 8 weeks of IVIG twice a week is going to be for nothing because she isn’t getting back to normal. I think she needs to be back at normal before we do this maintenace. Because that’s what it is, she’s not improving just maintaining. The only thing that’s not back to normal is her right eye.
Anyone know of any good info on the net about eye paralysis & CIDP? I’ve spent alot of time looking & I’m not finding anything good.
Thanks,
Kelly -
July 11, 2006 at 8:27 pm
Kelly,
(link deleted by administration)
This is what I was able to bring up with a google search, I didn’t have a chance to look through all the links (there are 10+ pages). I hope there is something in there that will give you some answers. If I can be of any help get ahold of me. Take care.
Jerimy
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July 12, 2006 at 5:04 am
Emily’s mum, stick to your guns. There are 12 cranial nerves supplying the facial area, numbers III. IV, & VI supply the muscles moving the eyeball, there are six muscles to each eye. Between 5 and 30% of patients with CIDP have cranial nerve involvement, Emily cannot move her eye to one side because there is a palsy of the lateral rectus muscle on that side. This is a squint, the risk is a lazy eye where one eye stops accepting visual messages so as not to confuse the brain with double vision. You are right to cover one eye,,alternate between the two eyes until you see the ophthalmologist.
DocDavid -
July 12, 2006 at 2:40 pm
hello emilys mom
I get double vision sometimes on my relapses …so when that happens I have to do my treatment to fix it .
I hope all to go well with your daughter .
God Bless
maria -
July 13, 2006 at 7:39 pm
Dear Kelly – I will tell you about me, and maybe some info will be helpful:
I have CIDP, a slowly progressive, asymmetric form that moderately is controlled by IVIG. I have had intermittent cranial nerve involvement causing varying degrees of double vision for a few years. Last October, I had a severe exacerbation which caused pretty bad disability in arms and legs, plus a very serious increase in double vision (eye paralysis.)
I was referred to a very top Neuro Opthalmologist, so I have learned much about diplopeia/esotropia from CIDP.
From Nov. until this past March, I had an unchanged bi-lateral esotropia of up to 45 dioptres, as measured by the neuro-opth.,which is a massive deviation.
He felt it would most likely be non-recoverable, as it was an un-changed level for 5 months. We made preliminary plans for strabismus surgery to correct the deviations, if the eyes remained the same for another month. He stated that the cranial nerves are very tiny, and non-healing axonal damage could easily have occurred.
Lo and behold, in April, the deviations eased to about 30 dioptres, so surgery was stalled. Improvement has occurred slowly and steadily since, and right now I’m at about 10 – 15/20 dioptres, with small fluctuations from week to week. It is now a manageable double vision, as I can clear a single image by tilting my head back about an inch or so.
Since my esotropia is unstable, prism lenses or strabismus surgery are out of the question for me, probably.
Asides from a positive response to the treatment protocol prescribed for your daughter’s CIDP, surgery or prisms are the only two real ways the issue can be fixed, but only when the double vision is non-fluctuating. For instance, if you had surgery, then had a subsequent CIDP attack that hit those nerves again – or, had a re-myelination of those nerves that caused improvement in your eye control, the results from the surgery would be negated and you’d have doubled vision – again.
When my double vision was severe, I really consider it among the most disabling of issues, as patching did not really help as both eyes were affected, and with one eye patched, there were still balance/vertigo issues. I feel empathy for you and your daughter.
What helped me? – An aggressive treatment protocol to nip the attack in the bud, and also time.
I did about 18 rounds of plasmapheresis during the early part of the exacerbation, which eventually slowed the attack. Then, I resumed IVIG, which had been halted months before because we decided to give IV Solumedrol a try to see if it was more effective. Unfortunately, it appears the Solumedrol helped to precipitate the attack. My IVIG schedule is now one dose every 3 weeks. I am also going to start Cellcept 1,000 mg soon.
I am a 43 year-old male. I am ambulatory again without aids, but now drive with hand controls. I was unable to drive an automobile from Nov. 05 until May 06.
I hope this info has been helpful. Is you daughter going to see an ophthalmologist, or a NEURO ophthalmologist?
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