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Optic Neuritis question (and also one about spinal tap results)
duchessmom posted:
Hi. I've had three attacks of optic neuritis -- each one similar, with the "thumbprint" blurring first, then the loss of color, then the loss of vision, and the deep achy pain (especially when moving the eyeball). For the last few days, I've had that same bad pain, but no change in my vision. (In the past, the vision changes came first, followed by the pain.) Can an attack of optic neuritis have just pain? If the pain comes first, how long before the vision is affected?

Also, does anyone know how long it takes for all the relevant results from a spinal tap? I'm very anxious waiting, since it's for diagnosis, but I don't know when the MS panel of the results will be done (I know they're doing a lot of tests, but that's the one I care about).

Thanks for any comments. Once again, this eye pain is awfully bad (and doesn't respond to painkillers), but I don't know if it's really ON, since my vision (thank goodness) is unchanged.
Barb429 responded:
Hi, duchessmom!

I get stabbing pain in and just above and behind the left eyeball — have had this since 1998! Sometimes the pain on movement is, uh, staggering!

I have ON and also TN (Trigeminal Neuralgia) on the left side of my face. Makes for a fun combination! My TN pain is usually just burning, tingling, and a "scrunched up" sensation; but I will occasionally get the lightening bolt jolts of pain that is part of TN. This pain seems to start somewhere in my forehead, travels through the eye and eye orbit, and down my cheek — sometimes to the nose, sometimes to the jaw/ear area. My left lower lip and chin sometimes feel like someone splattered wintergreen oil on them (burns, tingles). They used to feel as if someone split open my lip and chin with an ax. TN will also cause dental pain. The Trigeminal Nerves spread out over each side of the face, in nerve branches, and nerve fibers.

Oh, let's throw in TMJ Syndrome, also (Temporal Mandibular Joint Syndrome) -- BOTH sides! Our bodies go through a lot of "stuff".

Unless the process has been changed recently, a properly executed spinal tap testing takes 10 days at a qualified lab. The Cerebral Spinal Fluid is checked for several things, to rule out other possible causes. The tech should have taken blood from you the same time that you had the LP done.

The Cerebral Spinal Fluid (CSF) is compared to the Blood Serum that was taken on the same day you had the LP done. The process that takes so long is electrophoresis. If Oligoclonal Bands are found in the CSF but NOT in the blood serum, the test is considered positive for MS. Unless things have changed, this portion of the lab work takes a full 10 days.

Some proteins are also checked. Certain proteins may be high if a person has MS (but not necessarily so). The Oligoclonal Banding may also lead to other diagnoses, but a good diagnostician will consider ALL your tests, MRIs, your symptom history, and a clinical exam in giving a positive Diagnosis of MS.

I just read an article and watched the accompanying interview in Medpage Today that another test may prove to be beneficial in diagnosing MS. It involves ultrasonography of cerebrospinal veins.

Medical News: AAN: Testing Methods at Root of CCSVI Debate - in Meeting Coverage, AAN from MedPage Today of Form

Back to the eye pain -- what meds are you using? Neurontin (Gabapentin) helps. I take 1800 mg. each day, along with other meds: Reprexain (Hydrocodeine Ibuprofen) for severe pain, Baclofen for spasticity, Ativan, Nortriptyline, and Provigil for my MS symptoms.

The eye pain could also be migraines,, or even cluster headaches. Have you checked out your symptoms with your Neurologist and your Opthalmologist?

We can only go by experience and whatever research we may have done. Our opinions here are NOT medical advice. Please consult your doctors, consider what others may say, and ask your doctors questions! Living in limboland (not knowing what is going on with your body) is exasperating! I lived in that land for decades, so I empathize with your uncertainty!

Hope I helped, and hope others will also chime in.

Keep asking questions, vent, let off steam. We've been there.

roberlyn replied to Barb429's response:
INBARB!!!! we have missed you! where have you been?!

robyn (marlene's daughter)
roberlyn responded:
hi there. i've had ON three times as well and you described it perfectly. the thumbprint, then for me it becomes sort of a hole, then all over grainy and gray, then missing spots.

i've had the pain without the vision disturbances too and i've always wondered about that. is it ON if it's just pain? i'm not sure. but it's definitely annoying and can last a day or two.

the shorter duration (at least for me) has me thinking it's not ON exactly, since those flareups with the visual problems usually last weeks for me, not a day or two.

but i definitely know the feeling of always waiting for another ON attack :( whenever i get that pain, i get anxious that it's coming back.

anyway, that really didn't answer your question, but just know you are not alone -- and i feel almost glad that someone else gets the ON symptoms the way i do!

good luck to you with the LP (i didnt have one so i'm not sure about turnaround time!)

duchessmom replied to roberlyn's response:
Thanks for your feedback re: ON -- although it doesn't lessen the pain, it's somehow reassuring to know that other people have gone through the same thing. Sorry for your situation, too.

This pain is really bad ... it's been a week now ... I keep testing my vision, expecting that something like what I experienced before will come back, to go with the pain, but no changes.

I've googled and searched everywhere trying to find if just pain qualifies as an attack of optic neuritis -- but I don't see anything. I find descriptions the other way around (it can be ON with visual disturbances and no pain), but nothing to answer this. I've actually cried a couple of times from the pain, nothing seems to help it. At this point I just want to know what it is.

Thanks again to both of you for taking the time to write!
roberlyn replied to duchessmom's response:
time to see an ophthalmologist. if you've already seen one, you can probably just call and ask the nurse ... they might not even want you to bother coming in if they can just answer your question.

good luck!!

jbird64 replied to duchessmom's response:
For some odd reason, my ON is more chronic...I have it all the time along with the weird vision, but there are times that I get additional pain. Once they said it was an exacerbation of the ON and another time they said it was inflammation of another part of the eye called scleritis, and there's another one, too...I just can't think of what part of the eye can get the "itis" right now (ms brain!) These don't usually affect your vision, but do cause pain, and they do require treatment, so I cast a really strong second vote to robyn's to call your opthomologist's on-call service since it's now the weekend. You know, really, if you've had it for a week, it hurts bad enough to make you cry, and if you can't get anyone on-call I might consider the ER...not to scare you...but I wouldn't wait around too long since my sight is involved ;)
Take're in my prayers!
Barb429 replied to roberlyn's response:
Hey, Robyn!

Long, long story! My last laptop crashed, still haven't gotten it repaired.

This new laptop is taking a while to adjust to, got back on internet in March, been paying for the internet for entire time, too!

We're changing ISP's tomorrow (I should write a book about Ma B..., such as tech support for an American Corp, in America, for American citizens living IN America, is . . . where ??? -- try the Phillipines and/or India!). Can we say "National Security" issues? As in, do you know where your ID, your financial info, your credit info, etc., are -- or who's gotten the hacking abilities for sites a lot closer to their homes??

It's been a long, long time with NO contact with anyone of my MS friends. Sure do miss everyone, but see so few of the old gang here! This new format takes some getting used to, also. As in, why did they fix something that wasn't broken???

Sorry for seeming to dump, but it's raining here . . . again, and my body's aching head to toe. Just LOVE this walking MS barometer!!! ;) Hate taking all my meds even more.

How often do you talk to/ see Mom??? Are they still in WI??


roberlyn replied to Barb429's response:

are you on facebook? all of the old crew is there and we're in our own MS group. i told everyone you've been located and it's now our goal to get you on there :) there was a mass exodus when webMD went to the new format. apparently it would have been helpful if they had polled their users to see what would be better than what they had before they went and changed it all.

hoping you see this before the moderator police get rid of the post ...........

chat with you soon! (and yep, mom's still in WI, but we talk almost every day!)

FOURTHATTEMPT replied to roberlyn's response:
Hey there, Barb! Are you on Facebook? We all are hoping you will come join us there! Robyn has been on a mission to find you, and now that she has, you have to come and complete the "hot tub" reunion!!!

We miss you!!!!

aka Robsmom
duchessmom responded:
I'd love to know if anyone knows if an attack of optic neuritis can just have pain? For over a week, I've been experiencing the severe eye pain that has gone with my three previous attacks, but my vision hasn't been affected at all. My opthalmalogist is on vacation, and my neurologist hasn't responded to my message. If I thought it might be optic neuritis, I would push for an answer, but since my vision is okay, maybe it's something else? Anyway, if anyone knows if ON can consist of just pain, I'd really appreciate your guidance. Thanks so much.
Jeffrey A Rumbaugh, MD, PhD replied to duchessmom's response:
Yes, optic neuritis could consist of just pain without vision changes, or just vision changes without pain, but usually it includes both. You could even have optic neuritis without any symptoms.

"Optic neuritis" just means inflammation of the optic nerve; the symptoms point to the diagnosis, but to really know for sure you need to see inflammation, which might be done with a dilated eye exam, or might require an MRI or spinal tap. I've also seen people who have persistent eye pain, without active inflammation, probably due to previous inflammation and damage to the nerve.

So, could your eye pain be optic neuritis? Yes. Could it be something else? Yes. If you've had optic neuritis before, it's probably not so important to figure out if this is optic neuritis as well--it's more important just to get the pain under control. All of which is to say you should contact your neurologist/ophthalmologist about it.

With regards to turn around time for CSF testing for MS--it's variable. Most labs run oligoclonal bands only once or twice a week. So, you might get results in a week or so, or it might be a day or so, depending on when you have your lumbar puncture compared to which day of the week they run the test.

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