Optic Neuritis Anyone?

    • April 5, 2012 at 2:21 am

      I finally had a chance to go to the neuro opthamologist today.. and we got some answers!

      My eyes have been effected with this whole thing – double vision, and with the last relapse my right eye was affected more and the vision became worse- eyes hurt with movement etc- but all my muscles hurt when exertion, so i never thought too much of it..

      The dr said that it looks like I have had Optic neuritis in my left eye.. and possibly have it in the right (not seen on visual exam- but the evoked potential things – not a VEP, but some other similar test).. he said possibly retrobulbar ON.. Anyhow, he ordered a repeat MRI of my brain with dedicated orbits as well.. to look for cranial nerve inflammation.

      Anyone had this before??? He said he see’s it quite often with CIDP.. I think i’m glad to know i’m not just crazy I guess!

    • April 8, 2012 at 12:44 pm

      I don’t remember anyone specifically saying optic neuritis, Maybe it comes with one of the variants (miller fisher), but nobody that I remember mentioned it specifically. I do know that certain medications can cause it, specifically minocylene (antibiotic) as well ms. But your mri was clean. Perhaps that is why he is redoing to check for lessions. Did you have contrast the first time?

    • April 13, 2012 at 2:00 am

      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 ๐Ÿ™‚ 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!

    • April 14, 2012 at 12:27 am

      I looked into sarcoidosis for us, constant headaches were an issue and in the begining bladder/bowel was an issue. I knew that sarcoisdosis was more of an organ attack so that would fit the bowel/bladder issues. Once we got the ivig those issues cleared up. Plus the info on mayo’s site said it mostly affected African American middle aged women. We still have the headaches, DAILY!!!! BTW, many on the site have had one or two lessions on their mri’s but it was not determined to be ms. Our neuro told us people w/chronic migraines show lessions???

    • April 14, 2012 at 3:12 pm

      BNY, I think it was you that mentioned your face was droopy, I think that is a symptom of sarcoidosis,it has been a while since I looked it up. They have a site similar to this and they were really helpful when I went on it. There is a foundation much like here and they sent info when I callled. When do you get the test results back to confirm the dx?

    • Anonymous
      April 14, 2012 at 11:47 pm

      I had ocular migraines for a few years before I was dxed with CIDP in 2010. Wondered if it was related. hmmm
      Wendy ๐Ÿ™‚

    • April 16, 2012 at 8:15 pm

      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 ๐Ÿ™‚ 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! ๐Ÿ™‚

    • April 16, 2012 at 8:16 pm

      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!

    • Anonymous
      April 17, 2012 at 2:04 am

      I have blurry and sometimes double vision from CIDP. This makes my hearing feel off too…affects the senses.
      Florescent lights made it worse. I did go to a Neuro Optimologist and he said it was part of having CIDP.
      My neurologist said sometimes IVIG would improve the vision issues but for me it hasn’t happened.
      CIDP can do the oddest stuff and at least we can concur about it here.

    • April 17, 2012 at 2:28 am

      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!!

    • Anonymous
      April 18, 2012 at 1:30 am

      Mine charged $ 550 for the tests his assistants administered and his 3 second check of me. I was so tired form the long long waiting between tests I could barely drive home. The doc said he saw my condition with many CIDPers a month and I thought my city has that many of us? He acted like my vision wasn’t a problem…it is to me. Geez.

      Florescent lights make it all worse so I have thought of getting tinted glasses to wear in stores.
      My eyes are very dry and I was told it was maybe another immune disease…no. Just dry eyes and most likely my meds are causing it plus allergies. I use simple eye drops for lubrication (not the kind for red eyes).

      Take care,

    • April 25, 2012 at 6:11 pm

      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!

    • Anonymous
      April 27, 2012 at 2:58 am

      What are you looking for the eye doc to help with? Is it a follow up? My eye appointment mainly concurred with my regular neuro–yes, my eye sight was affected by CIDP and there wasn’t much that would remedy this situation. My regular eye doc knew very little about my condition.

      I keep the lub eye drops close to me most of the time. With the allergies my eyes get very dry and gritty too. Sometimes I splash cold water on my face to help remove any grit causing irritation.

      I have a hard time sitting in the office chairs and the long waits so I limit my visits unless its indeed necessary.