Double Vision/Eye Paralysis

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?