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Avatar universal

ON symptoms?? SPMS?

Hello my faithful friends.  I have done as much reading as my eye will allow on ON, but I am questioning if this is what is going on.  
I have had sx's of possible ON in the past and my good neuro (the one I like) actually put ON as one of my original sx's I think in my right eye, but no VEP, MRI or "expert opthomologist (in his mind)" has been able to find any signs of ON.

Today I woke up and behind my left eye hurts soooo bad. I know I have to wait 24 hours to decide if this is a relapse, but even if it is a pseudo relapse, I wanted to share my sx's and get some opinions. I have had issues with this eye for a couple months, but today the pain is so bad I am just over it and am hoping for some comments from others to make me feel better at the most I suppose :)

~pain behind eye sometimes just dull pressure and sometimes crippling stabbing
~blurred vision (Dr writes this off to my slight astigmatism and apparently it is fixed with glasses according to him)YEAH RIGHT!!!
~the color in my left eye is MUCH duller than the color in my right.  Things viewed with my right eye that are bright seem several shades more dull with the left.  
~I have to cover my left eye to read my cell phone or after I spend more than a few min on the computer due to double vision.  This has been going on since Nov and my neuro specialist just wrote it off as "there are no changes on my MRI"

I literally have 6 Dr appts next week (one with my neuro thank goodness) but I am sooo sick of going to Drs and getting tests run only to have them say "well we don't see anything new"

I will for sure bring this up to my neuro, but do I really need to let him put me through a VEP or something to check this eye?? Is there really any point?

I have had an official dx for 2 years almost and although I have had no change in all the MRI's I have had done in that time, my condition has gone down down down hill.  I can't tell what is a relapse and what are daily conditions that I deal with.  Some things bother me more on some days then not at all on others. Some sx's are obviously permanent left overs from attacks.  Oh by the way, can you actually have a chunk of your finger removed if it itches sooo bad permanently that you are going to scratch it off yourself??  I have to keep my thumb nail at a nub so as not to cut my itchy index fingertip.

On a second note, I have had sx's I can't explain documenting back to when I was 15 along with a bout of mono at 16.  My Dr's at UCSF have taken my history, but the specialist wrote down my MS start date as Dec 7, 2008.  My official dx was on Feb 9, 2009. I actually had my specialist tell me last visit that my pelvic issues "predate" my MS and can be dealt with my a regular urogolist and no need from a neuro uro. Yeah I won't be seeing him anymore.

  The original MRIs of brain and c-spine showed several lesions including Dawson's fingers in the brain, 3 c-spine lesions and a pons lesion.  Is it honestly possible to have had all of these lesions appear from the attack on Dec 7, 2008 and is it right for the Dr to assume my MS has not been around for years?

Their theory is to treat my sx's now and if the meds aren't working then we can look further into my history.  If I had MS for 17 years before I started DMD's, should I be pushing for more investigation??  I am just sooo confused about how I can slowly be degenerating over 2 years with few "obvious" relapses and have NO changes visible on over 5 MRI's.  

Sorry I am rambling on and on.  I know you all understand.  I just need some comfort right now.

Thanks for any opinions, advice, sympathy etc.
Lots of love n hugs
D
5 Responses
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738075 tn?1330575844
I'm not that crazy about my UCSF neuro either, but I'm not completely dismissing her, either.  

Sorry you're having to go through all of this - SPMS is kind of a subjective call, more based on your EDSS than anything.  If I recall correctly, you're on Tysabri? ...  It sounds like you're having a flair if these are new or worsening symptoms, and I'm really glad one of your many appointments coming up is with your neuro!  The thing with any of these DMDs, is they only slow the incidence of flairs/disability, but they don't stop them completely.  You can still have a flair on a DMD.

Keep us up to date with what your neuro has to say about all this...
Cheers,
Lisa
Helpful - 0
Avatar universal
Paula - it is sad but I am not clear if I have ever been officially dx'd with ON.  My GP and my neuro think I have had it in my past at some point but 4 other Drs I have seen including 2 optho's and 2 MS specialists say my optic nerves look amazing every time I see them.  

I am for sure going to ask my neuro where to find a neuro optho and get to the bottom of this.

Candy- yes u described my pain exactly. I am maxed out on the dosage for Baclofen and I tried zanaflex but I can't function with that one.  I am also taking 400mg of Lyrica daily and it had been helping tremendously till a couple months ago.  
Thanks for ur info I will make sure to write these things down to talk to the neuro about.

Bob- thanks for your reassurance. I am for sure going to shop for a neuro optho.  The first optho I saw was very in tune with other eye issues I have related to MS like nystagmus, eye fatigue but the wait was 2.5 hours after my scheduled appt and I was a bit overheated by the time I saw her. I hope I can find a good Dr less than 250 miles away :)
Helpful - 0
1453990 tn?1329231426
Keep in mind, that the Optic Neuritis Treatment Trial  (ONTT) found that 60% of ON patients can have a NORMAL VISION EXAM.  Without a VEP, it is pretty difficult to rule out ON based on an eye exam even if it is performed by an "expert ophthalmologist".  

All this stuff about Optic Disc pallor is really nice, but will only catch 40% of the cases.
If your doctor is not sending you to a neuro-ophthalmologist for neuro-vision issues, it is time to go shopping for one.  Looking in the eye with a slit lamp is not a good way to see damage to the optic tracts 6 inches behind the eyeball in the middle of the cerebrum.

Bob
Helpful - 0
1168718 tn?1464983535
Hi you, love n hugs right back atcha...............  

I have just been diagnosed with SPMS.............. you eye pain sounds very similar with what I have been having the last few months, especially in the morning when I wake up.  Does your face hurt too?  Like around your eye socket and cheek bone?    Mine does, and they said that I needed to increase my Gabapentin and take Baclofen 2 at night to help with that.

That is what they said I shoudl do.  I don't know if that would be a help to you, but I suggest you talk it over with your own Dr. but, I just got  back from UBC MS Research centre on Thursday and that is why my neuro told me.

Hope that helps, and know you are cared about.

Hugs,
Candy
Helpful - 0
1396846 tn?1332459510
D,
I am so sorry you are going through this, have you been dx'd with ON, aas you know it can lead to blindness if not treated so I am hoping that you get in to be seen asap.

I know that doctor appts can get overwhelming but they really are for your own well being. I hope they can find out what this is about and not the start of another relapse for you. You are in my thoughts.

Don't be sorry for rambling we all do it from time to time, it is good for us lol.

Take Care and let us know what the docs say,
Paula
Helpful - 0
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