[KathyV]

My double vision is back!

I stopped taking my Prednisone (per doctor's schedule) on October 15. Was currently on 30mg of Mestinon x 3 daily and was doing great until yesterday. Oddly enough I was at our local MG support meeting when I noticed my double vision returning. Could barely make it home driving and had to keep my right eye closed. I immediately took a full tablet (60mg) of Mestinon and rested my eyes. It eventually got better and I took 60mg again about 11:00 pm. But this morning it's back. I originally started out taking 60mg x 3 when I was first diagnosed this past July along with 40mg of Prednisone. My neuro reduced the Mestinon dosage on September 23. I really don't want to start back on the Prednisone if I don't have to.

I cannot believe it is back just when we're getting ready to go away next week on vacation. My husband is going to think I don't want to go away with him. My symptoms first manifested back in July one week before we were scheduled for a 2 week cruise!

Guess I'll have to call the neuro tomorrow.

[AnnieB3]

Kathy, I'm sorry. Are you having a return of worse MG symptoms too? I know that for some people, the DV only gets better on Pred. Can you leave the driving up to your husband on vacation and actually rest while gone?

Some people see double vision as a nuisance they can live with (except when it makes you unable to drive!). But it can also be a sign that your MG is getting worse. You've already answered your own question: Call your neuro!


Annie

[KathyV]

Originally Posted by AnnieB3

Kathy, I'm sorry. Are you having a return of worse MG symptoms too? I know that for some people, the DV only gets better on Pred. Can you leave the driving up to your husband on vacation and actually rest while gone?

Some people see double vision as a nuisance they can live with (except when it makes you unable to drive!). But it can also be a sign that your MG is getting worse. You've already answered your own question: Call your neuro!


Annie

Thanks, Annie.
My MG is only ocular so far (crossing fingers). My double vision is so bad that I can only drive safely for a very short distance in the neighborhood. I couldn't even pull the car into the garage this morning after church without thinking I was going to run into the sides. No way will I go out on the expressway!

[Pat 110]

Hey Kathy,

Sorry to hear your double vision is back. Maybe your neuro will just increase your mestinon so you don't have to go back on pred. Is there any chance the DV returned because you recently stopped the pred? If that is the case, I would imagine it would eventully go away in time. I remember well when I had the DV everyday for well over a year. I drove very few miles during that time and I was like a hermit. Then it just started getting better one day at a time and I was able to decrease my mestinon over time as well. I hope you are still able to go on vacation. Take care.

Hugs,
Pat

[KathyV]

Originally Posted by Pat 110

Hey Kathy,

Sorry to hear your double vision is back. Maybe your neuro will just increase your mestinon so you don't have to go back on pred. Is there any chance the DV returned because you recently stopped the pred? If that is the case, I would imagine it would eventully go away in time. I remember well when I had the DV everyday for well over a year. I drove very few miles during that time and I was like a hermit. Then it just started getting better one day at a time and I was able to decrease my mestinon over time as well. I hope you are still able to go on vacation. Take care.

Hugs,
Pat

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?

[DesertFlower]

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.

Originally Posted by KathyV

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?

[Miss Margo]

Originally Posted by KathyV

Does anyone believe that Mestinon alone helps with double vision?

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)

[Pat 110]

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

[allen L]

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.

[suev]

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