Optic Neuritis Anyone?

Thanks Dawn!! Yup, I’ve had contrast all three times – there was a lesion on the 2nd MRI and questionable one on my spinal cord in my neck… I had orbital and brain MRI this last time and they said it was normal.. so who knows!!! He said he see;s this with CIDP at least once a month- but when i search Dr Google it seems rare 🙂 He is now checking labs for sarcoidosis markers.. he said that a lot of people that are diagnosed with atypical CIDP end up being neurosarcoidosis! huh? I hadnt’ even thought of that!

Thanks so much yall!! Dawn – My first symptoms with this whole mess after the IUD debacle.. were FAST heartrate (resting 140’s…. even while lying down in bed- would awake from sleep with this ugh.. along with GI issues.. ) I have always had a heart rate in the 60’s.. so this was very strange! The neuro symptoms followed and hit suddenly and fast shortly there after. I agree, I don’t fit the usual demographic for sarcoid…but it would explain a few things! I sware I have tongue atrophy (though all the neuros- even all the drs at the als clinic say no).. so hopefully I’m just crazy as far as that goes 🙂 but sarcoid can cause that though, and also chest pain – I have had pains under the sternum with breaths for about 6 months now.. so we’ll see!! I have never tried steroids throughout all of this.. but the IVIG has worked tremendously.. sometimes more than others though. We may never find an answer, but as long as we can find a treatment that keeps things at bay a bit I am VERY VERY Thankful for that! 🙂

Wendy – I’m not sure if that would be related or not!?! Sure seems like anything can go with all of this! I had migraines years ago when I was on birth control – with the visual aura/scotomas/flashing lights etc, but once I came off of that haven’t since. So I always figured mine were hormonal even though they didn’t follow a pattern!

limekat- sounds just like me! My vision is worse with flourescents too! The neuro opthamologist I saw said the same thing.. but then he also wants to see me back in two weeks. He has already dialated my eyes and done so many tests, I kind of don’t want to go back!!! I’m just SOOO tired of testing and dr’s appointments, and since there aren’t many neuro opthamologists around it’s like a four hour process. ugh! He said he see’s this at least once a month with CIDP! who knew! My eyes also feel gritty at times- i initially thought it was allergies, but don’t think that’s the case now.. so who knows! I agree it’s nice to have people to relate to a bit on here!!

Wow Limekat- you sound JUST like me!!! well as much as it is irritating to have eye involvement, it’s nice to know that other neuro opthamologists see this too with CIDP! Flourescent lights also make mine worse too! My eyes are dry as well – worse in the mornings and nights, I just started using lubricant drops. When this all started I had gritty dry eyes and thought it was allergies, but after allergy drops didn’t work and the whole thing persisted, i figured it must be from whatever was going on with me!
Do you still see the neuro opthamologist? I am thinking about cancelling my next appointment (next week), I don’t have much free time, so spending it there for hours and hours is exhausting! Plus they just increased the IVIG to every two weeks, which means I have even less free time and therefore patience haha.. Hope all is well – thank you so much!