Ivig and double vision
 

Last Monday I started with symptoms of double vision, this was never a symptom I ever had before with my double vision. I was diagnosed with mg in August. Symptoms of muscle weakness in arms and legs and some facial weakness had started back in May. Anyway I'm only 23 so my dr recommended I try a thyme tony first (other than my mestinon which I did see great improvements with).

I had my surgery dec 4 and had no symptoms since.. At all. Then Monday the double vision started. My dr previously told me to only take my mestinon as needed so I had stopped when I was having no symptoms. What was your drs advice about taking mess without symptoms?

I visited the neurologist this week but could only get in to see a nurse practitioner ... Anyway they want me to keep taking my mestinon which is not helping my vision at all and then do five days of five hours each of ivig treatment. Because my symptoms have never been severe we never really talked about ivig before. I'm wondering if it will really help my vision iss:wink: because I'm having trouble working at all.. And wearing an eyepatch to even see at all.

Any advice on ivig? Or knowledge of it will really help me? I'm hoping cuz this is super frustrating and I actually work two jobs and am taking an online class and don't know how else to solve this diplopia issue!!

First post here.. Btw!

I have MG and have constant double vision despite Mestinon. I has prisms in my glasses. Is your double vision constant like mine? See your optomologist and let them try the prism lenses. It gives me a central area of single vision, the periphery still is doubled. But I am able to work fulltime on a computer.

If your vision fluctuates with the double vision coming and going, prisms may not help, but do see your optomologist.

Good luck
kathie

The mestinon does not cure anything. It is just there to help with symptoms.

Mestinon often does little or nothing for vision issues. That is not uncommon. I think your doctor is wise to recommend the IVIG. It will help with the vision, most likely, as well as overall functioning.

Even though you had the surgery back in December, your body is likely still recovering and processing the stress. Also, since you're female (I assume) hormone fluctuations can cause a flare up of symptoms.

The 5 days of IVIG will be a big pain in the ... but it's worth a try to help. If you do get good results, that will be good to know for the future. You definitely need to be at optimum functioning with your heavy schedule!

Oh, and welcome to the forum!:)

I had mg for about 10 years before the dv kicked in - Had a thymectomy about 5 years after diagnosis - didn't see a lot of improvement (other than removing a malignant tumor in my thymus!), but I'm quite a bit older than you (64),

I have dv full time and finally accepted it and had one the of the lenses in my glasses ground so that it is opaque but I still have peripheral vision on that side - it's better than wearing a patch (which I did for about a year).

Hopefully, the ivig will help and with the mestinon, you can get rid of the dv. Are you taking any immune suppressants (cellcept or Imuran?) You might talk to your doc about that. The other thing is prednisone - I know no one wants to take it due to the side affects, but I can help most people with the dv.

Good luck and let us know how it goes.

Juanita

thanks for all of the responses!

The double vision just started this week and is very bad.. I don't know if prisms will help because I guess I don't know how consistent it is yet. However, I do have an appointment with my eye doctor on monday to talk about those issues. I already wear glasses/contacts and have for quite a while so I'll have to see what he has to suggest.

My neurologist is weary of starting immunosuppresants and the like because I am so young, and want to have kids etc. He doesn't want to use those more "harsh" i guess treatment plans unless necessary, especially if something else more short term can work. I guess, in my understanding, the effects of these may change my body in the long term in ways I may not want for child bearing?? Unsure exactly but I do know he wants to wait on those (I'm engaged to be married next year)

I saw a nurse practitioner instead of my neuro doctor on thursday, and she said "maybe we can try prednisone, i'll ask your dr" and she called him and he said he would rather try ivig first to clear it up before trying steroids. I kinda figured from my readings on here that I would have to go on steroids.. but he said he didn't want to unless needed?

So i'm not really sure what all the reasoning is behind that.

Of all the symptoms i've ever had for MG.. (slight swallowing, total muscle fatigue and unable to lift anything, eye drooping, slurred speech, weak facial muscles) this is the WORST. I hope it is something I can manage or treat soon.. because I am literally going nuts!

Thanks again for the support, I've been reading this forum for a few days and it is good to finally hear people who understand. My fiancé supports me, but he doesn't get that sometimes things are hard. I think he seems me as a really young, should be capable of everything kind of person and gets a little frustrated when I'm like.. i honestly can't do that.

I don't have double vision, only extremely blurry at times, but I have read where some people with DV have put scotch tape on one lens of their glasses to help with it. It would be an easy fix temporarily, if it works.

Double vision was my first symptom of MG and the easiest symptom to manage as I had prisms put in my lenses and never had it since! They come in different strengths of prism so your optician should give you the most appropriate for you. Good luck hope you can get them fitted and they help you! xx