Should I get rechecked for MS

» Samiam29 - Hearing Loss & Other Misc.

About 8 years ago I was diagnosed with Optic Neuritis and treated with steroids. During this time I became very sick with migraine headaches, muscles pain and weakness, etc. I even had a large patch on my upper thigh that felt like pins and needles were sticking me. My neck became so heavy I literally had trouble holding it up. Tests came back negative for MS (MRI & Spinal) and they thought maybe I was having a reaction to the steroids. Two specialist said I did have Optic Neuritis and Two said I did not. I did have a visual evoked response test which came out fine and was told that that clearly confirmed I did not have Optic Neuritis, yet another doctor said he could see the damage, the other could not... Problems continued and have for years. One year after my eye problems occurred my sister got optic neuritis which was confirmed and she has permanent damage. We both have had similar problems over the years and would call eachother whenever we were having what we called (episodes). She too had been tested for MS and was told she had Fibro Myalgia, Chronic Fatigue and all the other "We don't know what's wrong with you" diagnosis. We both gave up going to doctors long long ago. But last year she was asked her address and couldn't remember it and had to take out her license. She then went back to the doctor and had an MRI. This time it was confirmed that she does have MS and was told she probably has had it all these years, it just didn't show up in the tests. Now family thinks it would be a good idea for me to be checked again. I frankly am tired of being told there is nothing wrong with me when I live daily in pain and have all these weird symptoms no one can explain. While I don't want to be told I have MS, if I am found to be fine, again, it will be like digging in an old wound. Back then I even went to a shrink a few times hoping to have a psych problem. I figured if it was all in my head then it could be treated with therapy. While the doctor said he enjoyed talking with me he assured me my problem was not in my head. Recently I have been having two new problems which leave me debating on whether or not get rechecked. This is where I'm hoping someone can shed some light before I decide to make an appointment. One is my hearing and the other is sparactic blurring and double vision. The vision problem comes and goes and the eyes exchange with eachother in severity of blurring -- Not one is consistently better than the other. The hearing problem I assume is related to my not being able to focus on ones words if there are other noises present (other voices, tv, etc.)because my standard hearing test came out just fine, yet I really do have trouble understanding what people are saying and it is really frustrating. What I'm wondering is with MS can eye and ear problems be caused from lesions or problems in the brain as opposed to the eye or inner ear itself?

-- posted by Samiam29

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» loveisjoy - Re: Hearing Loss & Other Misc.

In response to message posted by Samiam29:

First, let me say that I nodded my head while I read your story. I went to a total of 8 different doctors over several years' time trying to find out what was wrong with me.

Unfortunately, MS does not have a "definitive test" that lets you know with 100% certainty that you are dealing with this disease. I have heard stories of people whose tests have all come back negative, but have the classic symptoms of MS.

Believe me, I know how frustrating this is for you. Interestingly, I wasn't taken seriously until I had a bad bout of dizziness and double vision that was caused by MS lesions.

I know you dread hearing this, but I would encourage you to make another appointment. Arm yourself with as much information as you can. Write down details about your medical history, symptoms, and current complaints. Even if it turns out not to be MS, I would definitely want some answers.

Good luck to you.
-Pamela

-- posted by loveisjoy

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