Optic Neuritis and other symptoms

[skc04]

Hi - I am at my wit's end and appreciate any help or information anyone could give me:
About 4 years ago, I noticed dim/blurry vision in my right eye - come to find out it is inflammation of the optic nerve ( optic neuritis). This condition had persisited for almost 4 years - not recurring/remitting ON, but CONSTANT Optic Neuritis that has never gone away. In addition to this - other symptoms I have experienced include, but are not limited to:
- headache almost every day - occasional migraine
- swollen/stiff joints, expecially hands, hips, feet, knees, and back
-white coloring of toes and fingers when cold
- IBS
- weak muscles, especially legs
- intermittent periods of high blood pressure
- DEBILITATING fatigue, general feeling of illness ( like the flu)
*** I have undergone every test known to man including, but not limited to:
- Bloodwork for lupus, cancer, diabetes, STD's, Lyme disease, cat scratch, and others
- 2 lumbar punctures
- 3 MRI's
- Flouescein angiogram
-Thyroid tests
- Urinalysis

All tests come back negative for any sign of disease
I am 28 years old and have been an aerobics instructor for 10 years - so I am very fit, active, and healthy
No family history of disease
Never done drugs, hardly drink alcohol

***All the research I have done pertains to ON lasting a few weeks, then getting better - I have never heard of anyone having it this long and my Neuro-opthamologist is baffled. I am sure there is an underlying disease caud=sing all of these symptoms and I would really appreciate your input. Thank you kindly. :)

[CCF-Neuro-M.D.-PW]

Optic neuritis has several different causes - the term is just descriptive for inflammation of the optic nerve.
one of the most common causes is MS, and in this case it usually recovers over about 1-2 months, although repeated episodes can result in permament damage. Other causes of ON, could cause longer periods of symptoms. It just depends on the degree of damage - 1-2 months that you read is just the sort of 'average', there are shorter periods and longer periods.

I do not know how you were diagnosed with optic neuritis - MRI evidence of optic nerve swelling or enhancement, an abnormal exmaination of the retina, an abnormal visual evoked potential? these are the usual way that ON is diagnosed, although there are times when we make a purely clinical diagnosis, perhaps with less accuracy. If you have persistent symptoms, then almost certainly your visual evoked potential will be abnormal, if the diagnosis is ON.

Other causes of ON include sarcoid, Lyme, alcohol, B12 deficiency, medications like ethambutol or chloroquine, some genetic conditions, a single demyelinating event that does not develop into MS, syphilis, Hepatitis B, HIV, some other viruses like CMV.

Perhaps try to find what objective evidence was there for a diagnosis of ON, then start from there trying to generate a list of posssible causes with your doctors

Good luck

[skc04]

My neurologist did the Lyme disease test. I live in Denver, CO - ( been here 4 years), but lived in Iowa previous to that for 11 years. I do some hiking outdoors, but not alot, run, take dog to doggie park. I am pretty sure they have eliminated Lyme disease as a culprit

[johnflox]

Do you have diplopia (double vision) or difficulty in focussing?
Have you experienced the onset of floaters or small little flash lights in your vision?
Did you suffer any infection up to one year prior to the onset of your main symptoms, treated with powerful antibiotics?

[skc04]

No to all of those -

[merdatous]

I have a vague dx of ON.  I have fuzzy vision in my right eye started 8 months ago, colors are dimmer and it gets worse when I exercise, eat hot food, go into the sun.  Prior to this I had a completley blocked right sinus infection x3 months and was several courses of very strong anti=biotics.  I saw the ENT, opthicneurologist, neuro, had an mri, blood tests, but there is no precise dx. I feel it is related to the sinus infection, but the md's are all saying no. What other information does anyone have about this relationship? thank you

[Floxie99]

Out of curiousity, have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you may be suffering from an adverse reaction to that drug. These reactions can come on long after you are treated, and cause symptoms like you are experiencing. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Doctors just don't know how to handle this affliction, or just refuse to believe it exists.

If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://health.groups.yahoo.com/group/quinolones

[merdatous]

Hello
Thank you for the information, I was on Levequin and Tequin as part of the anti-biotice course.  I again have the same symptoms of putrid smell in my right nostril and was put on amox/clav again. My eye is still blurry, I'm at wits end? Thanks Maria Beland