Thanks, Pat.

We're going on vacation come hell or high water! We're driving from Cincinnati to Hilton Head. I feel fine, but if the DV doesn't go away, hubby will be driving all the way. Usually we trade off in 3-4 hour shifts. I've been off the pred for a month now. Maybe the ACR antibodies have gotten back to a high enough level to trigger the DV. I don't know how you dealt with the DV for a whole year.

Does anyone believe that Mestinon alone helps with double vision?

Mestinon alone does help with my double vision, although it has taken a long time (4 months I think) and getting the dosage just right (too much or not enough Mestinon gives me double vision). My doctor initially told me that the Mestinon should help the double vision but that it often takes as much as 5 months. I have only taken Mestinon for my MG.

As everyone is different and all doctors are different I'll just tell you my story....

I have occular MG - woke up with double vision one day - after seeing my neuro she recognized it right away and started me on mestinon - BUT sent me to the greatest specialist for MG in Canada because she knew that he would be the one to see for the most up to date info etc etc -
He put me on pred AND imuran - weaned me off mestinon - the reason he put me on pred was because imuran can take up to a year to kick in - so he gave me the pred so I would have relief sooner.... I was on pred for 9 months (weaned off etc. etc. during that time - and a lower dose)..... I am now on just imuran and "knock on wood" all is well. Come spring he will start to bring my imuran dosage down to see if I can tolerate a lower dosage. I only carry mestinon with me in case of an emergency - I've never needed to use it so far.

So, to answer your question (long story LOL) I would say with my experience NO mestinon alone didn't work for me (and I was on just it alone for 6 months)

Kathy, I'm so glad you're still going on vacation. Most of the time Mestinon helps my double vision. I choze not to take pred and had reactions to other meds so I only take Mestinon and get lots of rest. Good luck with yours and try to rest your eyes as much as possible.

Hugs,
Pat

IM totally confused with this ocular myasthenia. Totally confused, baffled, bewildered, but most of all, , Im just so ****** off and always angry, I will never give in and admit it has taken the best of me.
Ive been resting my eyes with incredible patience. I avoid computers, I refuse to read anything, or concentrate on anything the past week, and since I dont work much anymore, and have noone who needs me for anything, I lay down and shut my eyes every day at 4pm, figuring the rest and shuteye will help my nights since the muscles of the eyes are just tired.
Does not matter, and this is pissing me off even more.
Every night, no matter what I do, the eyes feel like they are going to malfunction, just plain tired eyes, and when I struggle, I get massive headaches, so I take the Mestinon before I get the pain.
It just ticks me off so much that no matter what I do, this OM wins.
I refuse to accept this. Maybe my neuro, and the neuro before him, and the neuro opthamalogist, and my opthamalogist, all misdiagnosed me. Well, I like to think like that.
If it wasnt for Mestinon, I would really be miserable

IM not sure whats worse anymore, the disease or the frustration I have because of it. (I know its all tied in, but when I had a hole bunch of surgeries for my back or my melanoma, there was always a light at the end of the tunnel)

My anger will never cease, and my will to outwit this crappy disease will never let me relax.
My neuro wrote me the prescription for the immunoglobulin A level test 2 weeks ago, he wants me to get IVIG, almost insisted on setting it up when I was in his office.
Not yet, Im not ready to trust any hospital and blood/plasma exchanges, no matter how safe it is, cause the odds of me getting this crappy disease is about the same as me getting another crappy disease from someone elses problem blood.
Yeah, Im angry, cant release it.

kathy i hope you decide to go and feel ok, no double vision problems.

btw, I dont come here too often anymore, only because I am so pessimistic I feel its bad for the members of a board like this.
Im afraid Id get banned for life the way I really feel.

Allen,

Don't leave us! I, for one, am glad to see some honest, hit-the-wall venting!! Everyone with MG has had similar feelings at one point or another. "part of the process" as they say.

I don't have the double vision - my issues are more generalized weakness and some ptosis........that said, I'm not sure how I would react if my doc recommended IVIG.
I think I would rather that than pred - and I think I would give it a try. But that's easy for me to guess at, when I'm not actually in the situation.

Getting angry at MG feels good from time to time - and is absolutely a fantastic release. But really try not to stay angry for a long time - cuz that becomes energy drain and will actually worsen MG symptoms. (I know - sounds good, huh?)

Allen, I don't think you are not pessimistic - you are honest about what MG is doing to you and your concerns about IVIG. You're in the middle of working through treatment options with your doc.

There is no perfect answer, many treatment options come with downside risk - but upside gain too. Do what is right for you...when it's right for you.

And keep coming to this forum...ok?

Sue

My turn for a rant today, didn't want to start a new thread, just to complain, I just need to get a few things of my chest, and I know at least if I do it here you will all understand!!!!! I feel like I'm always complaining to my family, although they say I'm not.

Today I'm feeling sick, just totally blahhh, so my MG in turn is playing up.
Had to go to the Dr (my GP) thismorning, and had to ring my nearly 70yo Mum to ask if she could take me, as I didn't think I would be able to make the drive all on my own!!!! Well this just sucks, me only 37 had to ring my dear old Ma to take me to the Dr. Now don't get me wrong, I love that I can ring her, but its just wrong that I have to!!!!!!!!!!
I hate that my eyes are closing as I'm writing this and all I really want to do is go and lie down. I want to be out doing stuff, working, gardening riding my gorgeous horse, if I sitll had him. I want to be able to live in a house where I can have a dog. And yes I do know all the good things about my life, but at the moment things just suck that I am not the person I once was, and can't do things I want to, I hate that I am now like this!!!!!!! I don't expect replies, as this is just a way for me to get down how Iam feeling, I usually feel sooooo much better once I've voiced it. I hate talking to Mum about this, as she hates seeing her youngest child like this.
Kate

Kate,
Isn't it great to have someplace to rant and people will understand. I soooo know how you feel. My double vision has been so bad this week that I can barely function. Driving is definitely out. Yesterday I had to have my younger sister drive me. I know I should feel lucky that my MG is just ocular, but this really stinks. So far the prednisone has not done its thing. Put a calll in to the neuro yesterday and am waiting for a callback. I don't know how most of you with more severe symptoms deal with it.

I hope you are feeling a little better soon.

Kathy

Kate, I FIRMLY believe that every once in a while, we ALL need to have a GOOD cry AND/OR a GOOD "pity-party". When you feel like you have been sad LONG ENOUGH -- (take your time -- get it TOTALLY out of your system), remind yourself that you are:
1. NOT in a wheelchair
2. NOT on a ventilator
3. NOT using a feeding tube (I do have this right, don't I??)

MG is a ROLLER COASTER. The "ride" is enough to get "whip-lash". It takes a strong neck AND a strong stomach to handle all the twists and curves. You have already PROVEN that you can handle this. You are a BRAVE, STRONG woman -- and I am VERY proud of YOU!!!

(((HUGS)))

Allen,
I'm so sorry that things are going so bad for you. This MG is a bitter pill to swallow. Mine is just ocular at the present time, so I've been trying to look at the glass half full. Knowing it could be a lot worse. I'm lucky in that I don't work or have kids at home, so that takes a lot of pressure off of me.

No refief on my double vision so far this week. The worst I've had. The mestinon does not help with the DV for me. Neuro put me back on prednisone (5mg), but so far nothing. When I was first diagnosed he started me at 40mg of prednisone. DV was gone by late afternoon the first day I took it. I'm glad he's being more conservative this time with the dosage, but I don't think 5mg is going to cut it. Have another call in to him.

Anyway, enough about me. I can tell by your postings, Allen, that you are very frustrated and angry with your MG. There is a man in our local MG support group who reminds me of you. Maybe men have a more difficult time "accepting" their diagnosis. I hope you find some answers. In the meantime, you have friends here that understand.

Kathy