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Neurology (Expert Forum)
PACNS: What are the benchmarks? How does it affect eyesight?
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PACNS: What are the benchmarks? How does it affect eyesight?
by Dave M, Apr 17, 2001 12:00AM
About four months ago, my wife was diagnosed with Vasculitis of the Central Nervous System. She is taking Prednisone and Imuran. A recent MRI shows that the vasculitis has diminished significantly, and she feels better overall -- recognizing that there are bad days as well as good. However, my wife's eyesight has been declining steadily over these months. Recently, the eyesight became much worse -- with pressure, cloudiness and a further reduced visual field, and she often cannot see well enough to read. (It's like looking through crumbled cellophane.) She does her best to keep active and positive, and answers to two questions would help us greatly.
What are the benchmarks for PACNS? We need some perspective on what we might expect over time, even in general terms. Milestones will help us better recognize progress and accept setbacks. How does it go with PACNS -- slow and steady progress or decline, or what? In general, after how many months might we expect what kinds of changes?
Is it expected that eyesight would be affected by PACNS? My wife's vision is much, much worse now than at any other time. Has the PACNS affected the part of the brain that handles vision? Can the medications play a part this decline? Could the vision problem be unrelated? What should we, and her doctors, be doing right now to reduce or eliminate the likelihood of permanent vision damage?
We will appreciate any information you might provide.
What are the benchmarks for PACNS? We need some perspective on what we might expect over time, even in general terms. Milestones will help us better recognize progress and accept setbacks. How does it go with PACNS -- slow and steady progress or decline, or what? In general, after how many months might we expect what kinds of changes?
Is it expected that eyesight would be affected by PACNS? My wife's vision is much, much worse now than at any other time. Has the PACNS affected the part of the brain that handles vision? Can the medications play a part this decline? Could the vision problem be unrelated? What should we, and her doctors, be doing right now to reduce or eliminate the likelihood of permanent vision damage?
We will appreciate any information you might provide.
Doctor's Answer
by CCF Neuro[P]-M.D.-RPS, Apr 17, 2001 12:00AM
Dear Dave:
I am sorry that your wife has central vasculitis. I am not sure what you mean by PACNS? I would hate to comment on something when I am not entirely sure about what your asking. Abbreviations mean different things at different institutions and with different physicians. So, I will forgo that part of our question. Autoimmune diseases such as vasculitis usually respond very well to steriods. When we feel that steriods are not as effective as they should be we will often add imuran. Steriods have multiple side effects, two being changes in the lens (cataracts, this is usually a more chronic problem) and possibilities of hypertension which can lead to pseudotumor cerebri (more common in pediatric patients). The latter can cause blurry vision. I would suggest seeing a neuro-opthalmologist and getting her eyes examined.
Sincerely,
CCF Neuro MD
I am sorry that your wife has central vasculitis. I am not sure what you mean by PACNS? I would hate to comment on something when I am not entirely sure about what your asking. Abbreviations mean different things at different institutions and with different physicians. So, I will forgo that part of our question. Autoimmune diseases such as vasculitis usually respond very well to steriods. When we feel that steriods are not as effective as they should be we will often add imuran. Steriods have multiple side effects, two being changes in the lens (cataracts, this is usually a more chronic problem) and possibilities of hypertension which can lead to pseudotumor cerebri (more common in pediatric patients). The latter can cause blurry vision. I would suggest seeing a neuro-opthalmologist and getting her eyes examined.
Sincerely,
CCF Neuro MD
The diagnosis of PACNS (Primary Angiitis of the Central Nervous System) was confirmed by Dr. Calabrese of the Cleveland Clinic after a visit there. We'd appreciate your comments about the milestones or benchmarks we might expect, understanding that those comments, of necessity, will be general.
My wife has seen a neuro-opthamologist group. They haven't identified a cause of the vision problems and are somewhat at a loss as to how to proceed. We are hoping you can give us some guidance on possible next steps.