hey everyone!!! HOpe everyone has been well! It's been a while since I have been on here.. I got a diagnosis of atypical CIDP/inflammatory polyneuropathy, but I don't have the typical symptoms, so I question the diagnosis sometimes.. well a lot of times!! But after 12 + neuros were all stumped.. at least I'm getting treatment and at times seem much better! When I was admitted into the hospital, I could barely move, breath etc!

the 2nd IVIG worked A M A Z I N G!!! I almost felt like the old, and better version, of myself! it was GREAT>.. however I got a cold and fever and things worsened.. then the next IVIG (every 3 weeks) didnt' work at all.. last one worked well again, but not like the 2nd one.. what a roller coaster!!!

Anyhow I had a question.. my vision has been "off" since this whole thing started... I have said it was double vision, but it wastn' exactly double.. just wierd!! Well now it has worsened and is obvious - it is double, or shadowed/ghost image one on top of the other..
My question is, with MG do you have diplopia when you have one eye closed? or is it only with both open? I have double vision mostly in one eye, a little in the other.. the images are one on top of another- is MG diplopia typically vertical or horizontal? I plan on making an appointment with a neuroopthamologist this week. I saw a regular suburban opth months ago and they said everything looked fine..

The scarey thing is I now have muscle atrophy in the hands.. so I fear my original fear- ALS.. though 3 emgs, and 12 neuros say absolutely not.. I hoep they are right! I have ptsd from my first dr appointment! Also my weakness has become more obvious as to where it is - mostly in the hips and facial muscles.. which from what i have read the proximal joints go against ALS, i think!

Any advice is greatly appreciated, yall are just a wonderful support group, and I thank you for all of your support!

I had double vision for about a year. If I covered one eye right or left my vision was normal. Anyway the neuroopthamologist will give you some answers hopefully. He was the one who gave me my first MG dx.
Mike

I've had double vision for 9+ years. It's mostly been vertical, but occasionally changes to vertical + horizontal. The double vision always goes away if I close or cover one eye. Recently I've had some decrease in my double vision with being on prednisone and cyclosporine. In addition, the weakness in my arms and legs have decreased significantly. But the double vision still seems the most difficult to treat. I'm losing hope that I'll ever return to NO double vision.

It sounds like it'd be a good idea for you to be evaluated by a neuroophthalmologist. I hope that you're able to get some answers.
Cate

thank yall both so very much for your time! I am going to see a neuro optho on thursday.. I worry that it is mostly in one eye, and not improved when I close/cover the other eye..not sure what the heck that means to my mystery diagnosis.. I guess could go along with the polyneuropathy affecting cranial nerves column.. we shall see! Maybe I'll get some good news- a treatable/manageable potential diagnosis. thanks again, hope yall are well!

I have double vision when using only one eye, things look just slightly off, like a ghost image on an old tv, or when you get really up close to an old glass-silverbacked mirror. Happens in my left eye only.

After way too many visits to ophthalmologists and a neuroophthalmologist, someone finally found my left eye has keratoconus. This means the cornea has uneven thickness in places. Which gives you the effect as if looking through an old piece of glass that has a ripple or two in it. Hence the strange, unclear, sort of double vision effect.

Nothing dramatic to worry about. Not much to be done about it, either. Which would not be such a big deal, except my right eye has some much bigger problems going on, the left eye works okay but has this little problem that keeps things from being quite clear.

Thank YOU for keeping us updated; I am also in the undiagnosed boat, and I have DV when I'm tired, that doesn't correct when I cover or close one eye. So I will be following your results with interest.

Tatia

thank yall so much!

winic- that is interesting, did your DV start around the same time you were diagnosed/or had exacerbations with your MG or no correlation?
It seems like mine would have to be related to whatever this neurological condition is since it all started at the same time.. however anything is possible for sure!

Geode- I will defintely keep yall updated... I wish there was a way to get my body back.. even if just for a few years!

I also was originally diagnosed as having CIDP , but a popped appendix put me in the hospital . My stay in the hospital put me under the scrutiny of more experienced neurologists . the diagnosis became LEMS , I have been taking DAP and have been doing much better .
I have not been been seeing double but for the past several months I,ve noticed some reluctance of my left eye to open and a certain amount of soreness of the eye untill I have blinked a couple dozen times . Is the IVEG a transfusion of anti-bodies .
hope you are well , and we can chat more later.

ejh2- REALLY??? that is really interesting? what were your symptoms originally that led them to diagnose you with CIDP? did you have any tests pointing that way? Did you ever try IVIG for that?? do you have facial/eyelid droopiness at all? Yup, the IVIG is a bunch of antibodies.. it worked GREAT the 2nd time (I had bad aseptic meningitis from the 1st time) and since then it sometimes helps pretty welll, other times not as much. They are going to start adding more meds now.. what treatment are you taking for your LEMS? What is DAP? It's also interesting that you have soreness at times- at the end of the day my eyes hurt to move- the muscles around them are just sore/fatigued! so strange!!

winic1- wow.. as far as the plate in your shoulder interefering with an MRI - I have stainless steel rods up and down my spine and they haven't interfered with my MRI's ever- They can't do the T3 ones (the stronger ones) due to possible interference, but otherwise it's not a problem. As long as the plate has been in there a few years I would think that they could at least do your head and attempt your c spine to get a better look! They are testing me for thyroid antibodies now too! and still trying to get into a neuro opthamologist.. apparently there aren't many of them around! best of luck!