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Thread: Hi new to the forum, optic neuritis question

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    Question Hi new to the forum, optic neuritis question

    Well, sort of new. I think I found this forum when I had issues about 15-16 years ago.

    At that time, I had a lot of odd symptoms & ended up having an MRI that showed a lot (20-40) small white spots. The neuro said he couldn't tell if it was ms related or migraines & I'd have to wait & see what else happened

    Symptoms continued & I eventually found out that I have celiac's. Almost everything settled down & I found a steadier job & got divorced (2 major sources of stress gone). I changed doctors & did not forward my records as I got a a lot of grief about my symptoms being in my head etc

    I've noticed some of my old friends gradually returning. Tripping on flat ground. Falling on stairs. Fatigue. Trouble speaking. Pins & needles in my hands & arms. Bladder incontinence. I've been ignoring them as best I can & try to be very digilent with my gluten free diet.

    In Dec I got the 'flu & have been very fatigued ever since. In Jan I got sharp pain behind my right eye that worsened with movement. My vision would be blurry in the morning & is worse in bright light (I've always been light sensitive). This has pretty much resolved but I still have an achy pain behind my right eye

    I see an optometrist tomorrow. If it was/is optic neuritis, will she see something off in that eye? I didn't realize she wasn't an opthamalgist when I made the appointment.

    I realize I probably should see my family doctor but I got so much grief the last time I pursued this, I'm just dragging my heels on it.

    Thanks for reading my novel & any input

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    Distinguished Community Member Jeanie Z's Avatar
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    :) Hi Josie and welcome to the forum. Do you have MS too? I am not operating in full sane mode lately. A lot of memory problems so I probably would not be much help. I've had MS over 55 years and have remained sort of the same since I began LDN in 2000. For info on LDN go to www.lowdosenaltrexone.org and click the MS link. There may be a link for Celiac also. Keep us posted on how you are doing and what the doctors say. Jeanie :)

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Josie88 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Well, sort of new. I think I found this forum when I had issues about 15-16 years ago.

    At that time, I had a lot of odd symptoms & ended up having an MRI that showed a lot (20-40) small white spots. The neuro said he couldn't tell if it was ms related or migraines & I'd have to wait & see what else happened

    Symptoms continued & I eventually found out that I have celiac's. Almost everything settled down & I found a steadier job & got divorced (2 major sources of stress gone). I changed doctors & did not forward my records as I got a a lot of grief about my symptoms being in my head etc

    I've noticed some of my old friends gradually returning. Tripping on flat ground. Falling on stairs. Fatigue. Trouble speaking. Pins & needles in my hands & arms. Bladder incontinence. I've been ignoring them as best I can & try to be very digilent with my gluten free diet.

    In Dec I got the 'flu & have been very fatigued ever since. In Jan I got sharp pain behind my right eye that worsened with movement. My vision would be blurry in the morning & is worse in bright light (I've always been light sensitive). This has pretty much resolved but I still have an achy pain behind my right eye

    I see an optometrist tomorrow. If it was/is optic neuritis, will she see something off in that eye? I didn't realize she wasn't an opthamalgist when I made the appointment.

    I realize I probably should see my family doctor but I got so much grief the last time I pursued this, I'm just dragging my heels on it.

    Thanks for reading my novel & any input
    Hi Josie88, and

    If your last MRI was 15-16 years ago, you may find that you're directed to a neurologist for another one--judging from what the first neuro told you.

    An optometrist might be able to detect the signs of optic neuritis (often there's pallor of the optic nerve). A visual fields test might be part of the workup the optometrist does, or it might not. You'd be better off seeing an ophthalmologist but you might want to go ahead with the appointment with the optometrist.

    I don't have any medical training but I've had optic neuritis, and what you're describing does sound like it.

    Good luck with the appointment and with other doctors you may be seeing. We'd be interested in knowing how this turns out. You've been coping with several issues for a long time now and I hope you can get some answers.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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    Medical care and medicines have changed a lot over the past 10 years. You should be seeing a doctor who may refer you to a neurologist for a full workup. If you do have MS and not migraines, or perhaps not celiac, the sooner you get on meds for MS the better. What you're describing does sound like optic neuritis. The optometrist might refer you to one if they see something awry, or to a neurologist. Good luck!

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    Eye problems are often the first symptom that sends people looking for answers. I have had a lot of optic neuritis attacks and deal with visual oddities ...that's what I call them!
    Anyway, when a doctor looked at my eyes the optic nerve was pale and it was obvious. And that was a regular eye doc who immediately said I Needed to see a neurologist. That was 27 years ago.

    Let us know what happens ...
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Welcome :)
    When docs say complex symptoms are due to stress, it means the doc doesn't know what's going on, in my experience. Easier to blame the patient or the patients lifestyle, than to deal with uncertainty.

    If it were me, I would find a neuro who is skilled, a specialist with MS and is open minded and respectful of me as a patient. They're are plenty out there, keep looking.

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    Welcome, Josie!

    Regarding optic neuritis: I have also had it, in my R eye. Very painful on any movement. I struggled to just keep my eye still and painfree. I temporarily lost a small amount of vision - 6 or 7 letters of type. I had to read forward and then backwards to catch the letters that were obviously missing.

    Regarding MS diagnosis: In the 10 years that you have moved on w your life, MRI's have continued to get better and better. Also, it is now believed that the sooner you treat w disease modifying drugs, the longer the time to disability.

    I wish you well. See you around the board,
    ANN
    Last edited by stillstANNding; 04-05-2017 at 02:10 PM.
    There comes a time when silence is betrayal.- MLK

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    Hi Josie and welcome to the forum.

    I too have had optic neuritis and you do have symptoms that may lead you to find that you do. I had eye pain behind my eye, but I also had brown outs. By that, I mean my vision would turn very brown. At first I thought something was wrong with the lights where I was working and it would come and go. Everyone told me the lights were bright. Anyway that was part of my optic neuritis. I have a blind spot in one eye, which I sometimes have to kind of work around when I am reading, etc.

    I was diagnosed and quickly got on one of the disease modifying drugs. After being on the drug awhile the brownouts stopped, but I still have eye pain.

    Please see a good Neurologist and a good Ophthalmologist as soon as you can. Your eyesight is precious.

    Good luck and I hope you come back often.
    Virginia

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  17. #9

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    Thanks to everyone that has taken the time to answer my question

    I got some news tonight from the optometrist. My retinal scan was good & she didn't see anything looking in my eyes.

    The bad news is that my vision in my right eye is worse. Left eye is the same. This is concerning to her because usually they worsen together. She also said there may be something going on behind the eye that she can't see. At this point, I mentioned being concerned about optic neuritis & she said that was her concern too

    I have to go back Friday for a fields test & possibly another? She will also will test my vision again. They couldn't be done tonight because they dilated my eyes for the retinal scan.

    I'm going to wait til Friday & see if anything is found before I make an appointment with my family doctor

    Thanks again for the warm welcome 😊

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  19. #10
    Distinguished Community Member agate's Avatar
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    Josie88, I guess my point was that an optometrist often doesn't have the same equipment as an ophthalmologist and can't get a view of the optic nerve. You might want to ask the optometrist if he's been able to get a look at the optic nerve. It sounds as if he didn't have a way to see it. I hope you can find an ophthalmologist eventually.

    I'm not saying that optometrists are incompetent or quacks. They're often highly competent at what they do. But they don't deal with eye disorders.

    I was going to an optometrist years ago, bypassing the ophthalmologist, and the eye exam I had at the optometrist's revealed a "posterior subcapsular cataract." It was a computerized eye exam, some years ago, long before everything was computerized. So I went hustling off to the ophthalmologist with this new "diagnosis" as a concern because if I had had that condition, it might have been due to some eyedrops he'd prescribed.

    As it turned out, I did NOT have a posterior subcapsular cataract. So much for the optometrist's computerized diagnosis.

    Some optometrists like to act is if they are as trained as ophthalmologists but it doesn't sound as if yours is one of those.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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