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Subject: Re: OPTIC NEURITIS W/O MS (MAYBE) IT'S BEEN SINCE JUNE 19, 1998-HELP! This is going to be a little long to explain. At the beginning of June I had a severe migraine (runs in family but I am not prone to them) this included vomiting, unable to open eyes, I had to lie down for a while it took over 24 hours to aleviate the pain. On June 19, 1998 I had a red spot in my left eye. I thought I looked in the sun the wrong way. On June 20, it turned to a black spot, '21 it turned silvery grey staying in the left corner of my left eye and by the 22 it covered almost half my eye stayed grey (blurry). On June22, I went to the Opthamologist who did a field test revealing the portion of my eye which I had lost sight, after many hours and tests in his office he referred me to a neurologist. On June 23, my eye was increasingly worse, I went to the neurologist whom sent me for an emergency MRI of the Brain, I had intravenous injection of die and pictures without die. The radiologist called my neurologist and told him I was find except they found a Pineal Cyst (1.8 x 1.4 x1.2 simple pineal cyst. mild mass effect upon the superior calculi. no hydrocephalus. Otherwise normal MRI.) That evening my neurologist called me and told me the MRI was fine. (I found out about the cyst by getting a copy of my paperwork from the office) I was told to go to the emergency room the following day for a spinal tap and blood work. I was tested for everytihng. The following day I had the pleasure of a spinal headache which was taken care of by 2 blood patches within days of each other.
Then I was sent to an neuro-opthamologist who ruled out, glaucoma, and many other problems, and diagnosed me with optic neuritis. I then was given from July 7-July 11 Sodiumedrothal IV therapy. After 5 days I stopped. The following day I became very ill. Unable to lift a glass or button my shirt I was having withdrawl from the steroid. I had called my doctor and he never got back to me, I also swelled in the face and legs. I had to go to the emergency room for assistance. They said I had a bad reaction and put me on non-steroid antiinflammatories. Then I finally saw the doctor who said it was impossible nobody ever has a bad reaction to the steroids and to take the anti inflammatories 3 times a day and call him every day. Well the medicine helped and he finally said I had a bad reaction. I still couln't see into August and I went back to the doctor and told him I can't see and I'm having horrible headaches. The headaches are at the top of my head and localized in the middle left with a heaviness at the base of my head. Needless to say I am having a lot of trouble now with back pain. My doctor told me good to have headache on either left or right of head this means that they are migraines. Prescribed tylenol codeine which made me ill then changed to percocet for two weeks. I have since stopped taking narcotics they don't help. My doctor doesn't want me to take Immitrex because it makes your blood vessels expand and retract. August 17th- I return to the the opthamologist who proceeds to tell me that after a field test my eye has stabalized? and to make an appointment in a month so they can fix the mirrors on my car so I can drive. I have to live with this. TIME FOR A SECOND OPINION August 19th neuro opthamologist (#3) I bring everything MRI, bloodwork, spianl tap, field tests. I take another field test and it's the same (not much sight) I am told I have a pale nerve and might not see again, this time it's done much more professionally but the concern now is what is this cyst all about? Is it causing the protein in my brain to flow properly and will it bet bigger? I am waiting to hear from my doctor (#3) today to see what he found out since he brought the MRI to someone. I am still haveing the same problems backpain, headach (which I don't know if it really is a migraine) heaviness in back of head, blind in left eye and now somethinig new I have recently since August 19th evening had tingling (very mild) in the tip of my toungue. I tire very easily but can't sleep. I'm just miserable. I am out of work on diability. I need a comfort level here. I need to know if anybody out there thinks that something has been overlooked. I hope I have givien enough information. Please Help. Sincerely, Kathryn P.S. Thanking you in advance.
_______ Dear Katheryn: I am sorry to hear about your recent diagnosis of optic neuritis. I am not -Your present doctors have probably indicated to you that there is a -Other (rare) causes of optic neuritis include postinfectious and -Approximately 30-35% of patients recover their vision completely, and I hope this has been at least somewhat helpful. If you have additional Good luck.
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