Optic Neuritis, Is it MS?

[ncowleyc]

Hi all, a few weeks ago I had a pain in my right eye. My eye ached after then just felt weird. It hurt to move but not that bad. I was trying to read and couldn't seem to read smoothly. I tried to read with just my right eye and noticed that I had to halt at every word for a second. It was slow going. After that my eye pain went away but it felt like my eye was swollen and hard. Still feels funny. Also color is faded in that eye and when I look around in a dark room I occasionaly get flashes of light at the edge of my vision. Does this seem like ON?

I have had other symptoms starting in January. Numbness, tingling, cold water being splashed on me, weakness on left side, left side of face went numb, started drooling because of numb mouth on that side. It started with TN. Had an Mri in Feb. Two tiny lesions but they chalked that to my age. Boy did that make me annoyed, Im only 31. With these symptoms does it sound like MS?

[ncowleyc]

Hi quix, followed your advice and made those calls. They have a way of helping with the MRI costs when and if I need them so that's good. For insurance I will have to go to the main office and fill out the paperwork. Not sure I would qualify. My husband makes too much I think. Unfortunatley he also pays a third to child support. Last time I tried to get food stamps they only counted half of child support and we missed it by 100 bucks. Really considering lying this time. I'm desperate. Called the mscare number. They don't take new patients without a referral from doc. I'm kinda stuck. Guess I'll wait to see what Optho says before taking anymore steps. However I will try to get medicaid while waiting. Good luck to me, haha. Thanks for all the great info Quix. You are truly what keeps this forum great.

[Quixotic1]

Hi, I'm so sorry to hear how badly you've been feeling and now to have the worry with your eyes.  I am a physician here on this forum, but I do not practice anymore and was a pediatrician, not a neurologist.  I cannot diagnose anything online, but I can talk about what you have told us in the context of MS.  I, myself, have MS and know first hand how some of these things feel.

It is very important that you try to get some insurance coverage.  Are you a single mom?  I gather you were working two jobs to make ends meet when the fatigue forced you to quit one.  Do you qualify for food stamps?  Could you get some emergency Medicaid?

First, your first episode of symptoms in January (of this year, 2007?) were a classic presentation of multiple sclerosis.  By that I mean that all those things you described are common in MS attacks.  Even, or especially, the Triageminal neuralgia.  Did that attack leave you with anything permanent, like a weak leg or a limp?  

Now.....I am trying to contain my anger and outrage here....I'm sure the forum members saw this coming.  You presented to the doctor with multiple neurologic complaints and suffering.  So they do an MRI of the brain looking for lesions.  So far, so good...  Then, THEY FIND LESIONS!!!! and, what do they do?   Oh!  they write them off as "normal for age."  *&^^#Y()**&^^$$**!!!!  Sputter, spit, stamp my feet!!!!  ...... and regain my composure.  NO.  NO.  and NO!!!.

When someone comes in with neurologic problems, you cannot dismiss lesion on the brain as normal.  The patient is not normal, they are having neuro problems!!  Yes, with age, beginning in the late 40's and increasing after that some people do develop "lesions" of unknown significance which increase in number with aging.  A very small percent may have one or two as young as 25.  FINE!!!  Those are seen in healthy people.  If you look for a lesion because you are suspicious for one and then you find a lesion then YOU MUST CONSIDER IT!!  You were absolutely right to be annoyed, angered, furious!! and then you must find a doctor and neurologist that is not defective, dense, dimwitted, and dismissive.  Those lesions, I will lay down money, are real and important.

The episode you are having now with the eyes sounds suspiciously like Optic Neuritis.  That would be a clencher to your diagnosis of MS.  Two attacks, with two different parts of the body affected, separated by more than a month, and two white matter lesions on MRI.  I'm glad you have an opthalmologist appt on Friday.  He needs to know of the Attack in January and what the symptoms were.  He needs to know that there were two lesions (whether or not they were characteristic of MS) on MRI at that time. And he needs to check you for ON.  Even if your optic nerve looks normal, you  may still have ON (only 50% will have an abnormality on fundoscopic exam)  He may need to do a Visual Evoked Potential and probably will want a repeat MRI.  It needs to be of the brain and spine.

Now, given what I have said, you should contact the local chapter of the MS Society and see if they have any advice or help for the work up.  Some Chapters can help with the payment for a diagnostic MRI or other tests.  Here is the link to contact your chapter.  

Also, first thing in the morning you need to call the state agency in CO that deals with Medicaid and explain the problem.  You are young (despite your brain's "age spots") and have two little ones who need their mom as healthy as possible for as long as possible.  I can't say you do  or don't have MS, but the odds are greater than 50% that you do.  If it is MS there are meds to help slow it's progress. We will be here to try to give you as much help as we can.

I hope you make those phone calls to the state and to the MS society tomorrow!!

Here is the Colorado MS webpage:

http://coc.nationalmssociety.org/site/PageServer?pagename=COC_homepage

Here are the four offices:

http://coc.nationalmssociety.org/site/PageServer?pagename=COC_about_offices

Here is a list of MS physicians and centers that participate in the largest international group, The Consortium of MS Centers:

http://www.mscare.org/cmsc/index.php



Keep us posted and ask anything you want.  Quix

[ncowleyc]

Thanks all for your advice and kind thoughts. I have an appointment with an Opthomalogist Friday. Hopefully they can take a look. Not sure what tests they will do but certainly will ask about those tests you mentioned. Only bad thing is I don't have insurance. Oh well :( Had to quit night job because of the extreme fatigue. Also have 2 toddlers to take care of during the day. Not getting any sleep was making everything worse. Anyone know of a good MS specialist in Colorado? Or do you have any advice on how to get some help with insurance? I would buy insurance but not enough money. Can't afford groceries as it is now. Thanks for all your help.

[dsmommy]

Definately go see a good neurologist.  My moms MS started w/ ON but the MS was not diagnosed for a few more years.  Once they looked back at the MRI's it made sense that that was the onset since there were a few lesions that they didn't pay any attention to at the time.  Luckily there is some medication out there now that can help so much if it's caught early.  Good Luck and I will keep my fingers crossed for you!

[floridamom2]

Welcome to the forum!!  Your symptoms sound neurological in nature and need to be evaluated.  If I remember correctly the "lesions caused by age" statement makes no sense according to our resident Den mother (Quix) info.  You should read the thread entitled MRI's & Lesions by Quix - it is extremely informative!

You should make an appointment with a MS Specialist to have him / her evaluate the MRI films and do the full MS rule out workup which includes MRI's of C & T Spine with and without contrast, Evoked potentials,  and Lumbar puncture. I have alot of the same symptoms you have but do not have lesions or a diagnosis yet.   It is not an easy  (or fast) road to a diagnosis with alot of neurological conditions so Hang in there and let us help support you through it!

Take care and I will be praying for you!
Kristin

[fishyfish]

Your symptoms could be MS-related.  Do you have a neurologist?  I would imagine any good neurologist would be concerned about the lesions on your MRI along with your symptoms.  Since your main symptom now is eye-related, you might ask for a VEP test and see what that shows.  I'd definately follow-up and continue testing.  Good luck!