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Optic nerve swelling
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Optic nerve swelling

Last week I went to my 23rd appointment over a year's time that concerns optic nerve swelling - much more pronounced on my right eye with minimal swelling of the left.  I have had a brain MRI with dye (they were looking for MS signs or a tumor); CAT scan of my orbits, every vision test including visual field in the opthalmologist's office, - all are negative for any abnormalities.  I have no symptoms at all except for every once in a while (not daily or even weekly) a little wavy peripheral vision off to the side of my right eye - but when I blink it goes away.  My ESR and CRP blood tests were a little elevated - 58 on my ESR (I am 56 years old) and CRP .10 which my doctor explained to me that they shows inflammation somewhere which goes with the optic nerve swelling I assume but she was not too concerned with the ESR unless the number was twice my age.  I have seen my Internist, an opthalmologist, a neuro-opthalmologist and a neurologist.  No one can agree what this is nor the treatment.  Currently I have no treatment.  I do not have headaches, dizziness, pain, nausea, loss of balance - nothing except the occasional right-sided, wavy peripheral vision.  Pseudo celebri has been mentioned, or temporal arteritis etc but the symptoms don't relate.  Now the newest is get a spinal tap to measure opening pressure.  But the neurologist said that if I do have excess fluid in my head it would be causing equal swelling of the optic nerves because "water" finds its own level and therefore would be pressing equally on both eyes.  I do not want to have any invasive test at all unless I am convinced they are not just not "fishing".  All four doctors I have seen have said they are stumped.  I am going back to the opthamologist at the end of this month for a recheck to see if the optic nerves are any better or worse or the same. And I am also having a repeat ESR and CRP to see if there is additional elevations.  My internist said that maybe this is just an ocular migraine but I don't have any pain?  I am frustrated and tired of going to doctors and having tests.  It has been a year since this was first discovered - I had gone to the opthalmologist to get new glasses because I hadn't had my eyes checked in over 5 or so years and he found the swelling.  So it is possible this optic nerve swelling has been with me for all 5 years, I have no idea.  Any suggestions on next steps?  I want to avoid a lumbar puncture if at all possible.  
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233488_tn?1310696703
With a sed rate that high and a CRP that high and optic nerve swelling many ophthalmologists would recommend a temporal artery biopsy on the side with the most swollen optic nerve.

If the neurologist and neuro-ophthalmologist think you might have pseudotumor cerebri (also known as benign intracranial hypertension) it may be important to get the lumbar puncture.

You have a complex problem that has stumped your physicians. If you don't like the term "fishing" then help them "dig" up the correct diagnosis.

JCH MD
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Avatar_n_tn
Dear katmac - My dad is going through the same thing.  He had an MRI and a spinal tap but the results cam back negative.  What was your outcome?  I'm not sure what our next course of treatment is or what test is next.  But he has no symptoms either other than his vision blurring and being unable to refocus.  They don't know why the optic nerve is swelled.  Any help is appreciated. ***@****
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233488_tn?1310696703
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Avatar_m_tn
I am 31 years old. I am having the say problem we cannot figure out what is going with me. either. I am don't want the spinal tap either. I am scared and nevres. I don't understand it. It all confusing.
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Avatar_f_tn
My husband has just experienced Optical nerve swelling. He does have MS which is the probable cause for the swelling. He just finished 5 days of intervenes steroids. So far so good... What has helped as well is a high dose of antioxidants, via the form of Chocolate, not just any chocolate. We have explored many different natural methods to control his MS and we found that XOCAI healthy chocolate has assisted. Especially with the RLS - restless leg syndrom (syndrome). At the time we were open to anything. I am hoping with the steroid doses and high consumption of chocolate he can have a full recovery. We are all oxidizing (rusting inside) so lets stop the rusting and chocolate was the option.... Best of luck
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