UPDATE - Mestinon
 

So I have been on the Pyridostigmine and at first it was dramatically improving my eye, but I guess now my body has grown immune to it because it no longer helps. This is a common problem for me with other medications, so I can't say I'm surprised. I was taking 60mg but only half in the morning and half at night. When it stopped working I decided to up the does to one whole tablet of 60mg in the morning and one whole tablet at night, but so far it hasn't helped. I'm pretty disappointed :( Now I'm back to looking weird again and it's hard to accept that this may be my new reality.

ORIGINAL POST:
Hi Everyone,

After having an MRI, 2 CT's, and numerous blood tests, I still do not have any concrete answers. Although I have tested negative for MG, my neurologist said that my droopy eye is the very first symptom of MG so she has put me on Pyridostigmine which I am starting today. She wants me to take this medication for 2 weeks to see if my eye improves. She feels that it is still possible that I may have MG, but still tested negative because I am in the early stages. To me, it feels like they are grasping at straws. Has anyone else tested negative and then it turned out they had it, or gone through a similar situation?

No need to believe this is your fate. Mestinon has a wide range of dosages and dosing schedules that can be explored to find what works best. Since you had good results at first on the MINISCULE dose you took, there is reason to believe that with an adjusted dosage and schedule, you can get better results. I would suggest you call the prescribing doctor and tell him/her what you've discovered.

FYI--Mestinon is not something that needs time to be effective. It is a short acting drug that treats symptoms, and does not address the actual disease process.

I'll just add that MG is a fluctuating problem and is affected by lots of factors (like stress, infection, tiredness, heat, etc). It might have stopped working for a reason other than 'mestinon immunity'. I've had times when it didn't seem as effective. On one occasion, it turned out I had an infection and the mestinon 'stopped working' until I was able to get that under control.

Don't give up on it yet. Talk to your docs as that dose is very low and perhaps just a little more drug will get you back in shape. Good luck . Your new reality may just be temporary.

It can be more useful to read people's experience on a forum, but it's good also to know what the research says for conversations with your doctor:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772854/

I think I've read studies which say that ptosis is pretty hard to get rid of even with meds. You might look for some of those studies.

As far as your situation, negative tests with ocular myasthenia and early in the disease (or later) are possible.

thank you gr8ful
 

Thank you, this really made me feel a lot better! I have been under a lot of stress lately, so I will cross my fingers that this is what's causing the problem. I also noticed that if I drink soda (whether it be caffeinated or not) also affects my eye. That sounds ridiculous, I know, but my eye seems worse on days (or the day after) I drink soda.

thanks heat intolerant
 

Thank you very much for the article! I have been doing more and more research on Mestinon and MG but have not come across this article. I had never heard about MG, ptosis, or the like, so the more informed I am the better I feel about it.

Hello Brooketrout :) "Sounds ridiculous?"...not at all and it isn't your imagination! Soda is infamous for travelling up and out the nose of many myasthenics and, you have science behind you on this one. The nose, the eyes and the mouth are connected. I gave up soda, yearsssss ago because of these "exit my nose" and "sting my eyes" episodes. I am now a coffee-a-holic....:p

Your mestinon dose seems pretty low. I take 60 x 4 a day and 180 time span at night. I would contact your neuro about increasing the dose. The heat make everything worse. Have you tried staying out of the heat and in air conditioning for the day to see if your symptoms improve?

When my eye get really bad, I put an ice pack on it and get immediate improvement.

Reducing eye strain may help with the eye muscle weakness as well. Are you experiencing double vision?

thanks
kathie

I have had LEMS for over a year, they tried steroids, IVIG still get ivig every other week) and the mestinon, I was on 30 3 times a day for 8 days, noted nothing at all, they then switched me 60 mg every 6 hours for another 8 days and I got no effect at all. they ended up getting tossed out the window as they were not working.. that is my take on mestinon.
:mad:

davew, I've read mestinon does not work for everyone with MG. (I think I read only 50% get a lot of benefit from it.) It absolutely works for my MG but I will say that it doesn't always work 100%. On a good day with mestinon, you can't tell I have ptosis. Then, there are days when I am run down or under stress when a full dose of mestinon won't fix the ptosis 100%. This summer I was taught a few harsh lessons about MG and heat. Mestinon might have helped, but it wasn't very obvious if it did.

Anyway, I do feel gr8ful mestinon helps as much as it does. When it works, it's like a miracle.