Optic Neuritis + Iv Steroids + No New Dx = Me At The End Of My Rope

[ophelialit]

Hi, all...

Soooooo, it's been a WHILE since I've been on the forum....my life has been the epitome of topsy-turvy since this summer when I left my perfectly terrible marriage, uprooted my entire universe and moved to Dallas, TX to be with the man who's turned out to actually be the soul mate I suspected him to be. The last 3 months have been--as you might imagine--the most stressful, amazing, wonderful, harrowing days I've ever known. In the midst of all of that upheaval (which involved a LOT of travel, and you know how well we POTSY's handle that), I managed all of my symptoms and just tried to maintain whatever level of physical normalcy I could. Apparently, I didn't do as good a job as I suspected.

Fast forward to 2 weeks ago: I was returning from a conference in New Orleans when I noticed that my right eye was flashing all kinds of interesting lights in dark--purple and green and gold (Mardi Gras, festivity, yes?) and that my vision was becoming kind of dim. By the time I reached home, that night, I wasn't able to see street signs or lights....or anything really. And I was plagued by a pounding, sickly, dull pain in the right side of my head which wasn't making things any better. I immediately suspected a detached retina what with the lights and "descending curtain," so I called my eye doc from back in DC (hadn't yet had time to find a slew of docs here in Dallas--sigh) who advised me to get to a retinal specialist ASAP.

Long story short, I was diagnosed with optic neuritis, sent off for an emergency MRI since the condition is so closely associated with MS. Scheduled for a Visual Field test, labwork, an appt. with an neuro ophthalmologist....the MRI came back clean, the Visual Field confirmed that I can't see diddly, and the neuro scared the heck out of me because he kept exclaiming, "You can't see ANYTHING!". Yeah, I know. He's still stuck on the MS angle, so scheduled me for another MRI...this time of the spine. Because I've also got so many floating autoimmune issues, he did say that it could be idiopathic autoimmune optic neuritis, but basically? I don't really care. I just want to see again.

SO! What did Dr. Doom prescribe? A 3-dose round of IV SoluMedrol via a home health nurse.*sobs* I hate drugs. HATE taking meds. I understand this is the treatment of choice and that it might hasten recovery (that's a pretty big MIGHT, by the way; studies show that the eventual outcome of ON isn't affected by whether or not you take meds....just the short-term potential resolution), but I wanted to no part of it. I did it anyway. Walked around with the port in my arm for 3 days flushed and shaky and sweating on the steroids. Dragged myself through the withdrawal (I'd declined the taper dosage as that's apparently just prolonging the misery of being on the drugs). Read all kinds of stories about how people experienced immediate relief from the SoluMedrol and could see within hours. Yeah. No. Not me.

I'm now 3 days post-treatment, and all I feel is oogy from the meds and frustrated. And blind. Wondering if/when this will resolve (if I read one more medical journal that reports "spontaneous and rapid recovery at 2 weeks is typical," I'll scream something unkind) and wondering what else is coming my way with all of this autoimmune stuff. Is it actually going to be MS after all this time? Ughhhhhhh.

Soooooo, I come to you, my community....anyone have any words of wisdom? Cool tips for not being disoriented from lack of vision in one eyeball? A good knock-knock joke? Anything?

[sue1234]

Wow, sounds like an awful experience! Sorry, I don't know anything about optic neuritis, just hope the med helps it...within the next two weeks!LOL

You can't see at all, or you just have a diminished visual field?

[Katybug]

Ophelia! I'm happy for you about the new guy! But, sad for you about the new (scary) symptom. No words of wisdom other than to just hang in there and keep your always wonderful sense of humor. I'm sending positive thoughts and vibes your way in Dallas.

[Chaos]

Well at least you keep changing things up. Last we heard I think it was your other end that was keeping you occupied and miserable.

DC to Dallas...hmmm...that must be some sort of culture shock. At least you're close to Dr. Levine there so you can go get set up on an exercise program with him. Maybe that will solve all your autoimmune problems. You can wear an eye patch while you row and look like a pirate. Ahoy matey!

Sorry to hear about your struggles. Can't help you with the ON. My son had pars planitis which is another auto immune inflammation of the retina but not the optic nerve.

Glad you have someone there to support you thru all the joys that dysautonomia brings!

Hang in there. Good to "see" you again.

Oh BTW knock-knock.......(never mind, it's not that good.)

[ophelialit]

Thanks for all the greetings, friends! Sue, my vision feels like it's been whitewashed....I can "see" shadows and movement, but it's all behind this blinding white light. (Yes, yes, go toward the light, Carol Ann!)

Katybug! Yeah, the new guy is...well, utterly amazing. Kind of a fairy tale story as we first met in 7th grade when we were 12....some 27 years ago....whatwhat?

And Chaos, I have to say.....I'm liking Big D Dallas way more than I ever did DC....better weather, sane traffic, survivable cost of living...lots of steaks...

Anyway, I wake up every morning hoping for some kind of miracle vision recovery....so far? Nada. I'll keep y'all posted....hope everything is good with each of you....anything new and exciting in anyone's life? Let me rephrase....anything new, exciting and AWESOME going on?

[bellgirl]

I actually thought I had Optic Neuritis when all of this started. I had blurred vision and horrible pain in my left eye, which was misaligned after a virus, according to one optometrist, but by the time that I made it to the Neurologist after 2 months of waiting, that was, let me just say, less than stellar, who I've found out since has retired, PTL, all the pain was gone, my MRI was normal, but my vision has never been the same. I've been told that whether you have the solumedrol or not, the results are still the same. Wish I had caught you before your treatment. I went to an Optometrist and Opthamologist, both of which said something was different about my optic nerve, but couldn't pin point it at the time and recommended an MRI. I still have vision issues, but lately after going to a corneal specialist and antibiotic ointment treatment, along with preservative free eye drops every hour my vision has improved immensely. The neuro-opthamologist ruled out optic aneurysm, and said he couldn't even see through my cornea to visualize my retina, to examine my eyes, so he is the one who sent me to the corneal specialist...I still use Refresh ointment in my eyes every night, and it has helped immensely, and drops of Refresh during the day. I believe it's my hypovolemia, chronic dry eye, and dehydration forever with dysautonomia, that caused my corneal issues. I probably should have IV therapy. I don't have MS, according to my new neurologist, who is wonderful, btw, and one of my favorite doctors. It's good to get your spine checked out. I just read recently that those with dysautonomia have lewy bodies in their spines, like Parkinson patients, postmortem, since they can't diagnose that without slicing your spine, which I wouldn't recommend doing...lol. I found that interesting.☺ Hope you enjoy Dallas. Make sure to get a big hat and some fine boots, and I hope your vision improves, like mine did!! Still not "normal", but what is normal, anyway?!