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
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 :)
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
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
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