Hi everyone!

My name is Karen and I am 35yrs in Tampa, FL. My neurologist and neuro-opthamologist both think I have MG as I have had issues with ptosis (in the morning when I wake up usually- which is odd & neuro says atypical presentation), double vision, a lot of weakness that has gotten worse and even days when pushing a gas pedal is too much. Recently also occasional slurred speech. I've had on and off issues with swallowing for a while- but I also have a dx of Ehlers Danlos Syndrome and there are a lot of overlap symptoms with MG so hard to tell what is what.

My antibody test came back negative. Neuro has ordered CT with contrast of my chest, and an EMG. While we are waiting on those (CT sept, EMG in Oct but on waiting list for earlier) she wrote me a script for Pyridostigm 60mg. She wanted me to start taking 1/2 tab 3x per day- partially as I only weigh 90lbs. First dose on Sat afternoon, I noticed myself feeling a little more clear headed. Also managed to clean the refrigerator (with help of BF)- and not just wipe it down, like everything out and SCRUB it! (btw, it is awesome, it looks new. I smile every time I open it!) After, I crashed. Dose later didn't seem to do anything. Sunday managed to run some errands- but then again later crashed. It seems like when I take it, it helps for a couple hours- but then after I feel worse. I skipped the 3rd dose last night and slept fine. Woke up usual tired but nothing worse. I haven't noticed any side-effects, diarrhea etc.

I have a call in to neuro to ask about dosage/scheduling when I take them. But- that return call can take a while!

Do you think taking 60mg will help not crash after? She had said after a few days of 30mg I can up it to 60mg- but I still feel weird taking a med for a dx I don't actually have yet. And worried the crash after 60mg will be worse. Or is the 30mg making me feel better and then I am not pacing myself as well and that is causing the crash?

Any ideas on why I'm having highs/lows or is it how I pace myself or dosage or whatever you got... thanks in advance!

You are experiencing a typical response to a low dose of mestinon. It lasts at most 3-4 hours and if you've overdone during that time period, you will feel it and the next dose may not work as well.

You should probably call and discuss with your doctor. You are responding to the mestinon...just not consistently enough, likely due to the dose being too small.

Hope this helps.

Thanks 4-eyes.

I finally got ahold of doc. She also said that 3x/day didn't mean every 8hrs so I could play with the time schedule a bit to keep things steady- so take every 4hrs or when I feel it wearing off.

In other news, I showered today! Had been a while... I still used my chair, but I didn't have to take a break when washing my hair! Felt human in a good way

Mestinon only lasts for me about 3 hours. I did find for myself that mestinon made me feel better but that I could not do any more. Just like you I would do too much and then have to crash in the recliner for hours, sometimes days. I finally learned that even though mestinon made me feel better, I still had to pace myself.

Mestinon does not cure the symptoms, it only temporarily improves them. For me, it gives me about a 20% boost. If try to behave like pre-MG me, I will pay for it with time in the recliner.

I know it is hard but if you pace yourself more, you will have less of the mestinon highs and lows.

kathie

Thanks Kathie.

I think I did better today I am trying to pace myself, and hoping to figure what that means on medication- testing the new boundary. I have had major fatigue and weakness for a while so I know I won't be off and running laps (that has never been me anyway!) Just is frustrating when "ok, I showered" and then taking a break is pacing myself but still an improvement!

I think Kathie said it best, we can't behave like before MG. Mestinon is not a cure all and we can't go back to the way we used to be. It's there to help with the weakness but is not a license to overdue it. With MG learning how to read your symptoms and how to pace yourself are the real skills that will help the most.

Joe

Also- side question to this... since the pyridostigm is helping, is that indicative of MG, or is there something else that it would help with? Still waiting on dx, just wondering if the medication working points in any certain direction(s)

Yes, the fact that mestinon is helping, is a good indication of MG. Mestinon is used to treat a few other disease too, like LEMS and autoimmune autononmic disorders.

lets us know how you do
kathie

Thanks, there is a definite "perking up" that happens fairly quickly after I take it- most of the time, sometimes it doesn't seem to do much. however after I tend to have a big crash. upped to 60mg and at about 3.5hrs was dizzy, nauseated, and now on the couch with feet up barely moving. trying to decide if the "perking up" is worth it!!

Hi Karen
I live near you in Brooksville. I was diagnosed in May. I have gotten lots of support from this group. There are a few others I have met from our area also. I see a neuromuscular specialist in St Pete and have just started going to the MDA clinic. I am on prednisone and will be starting Cellcept next week. So far I am seronegative with a positive Tensilon test. I have mostly ocular and bulbar symptoms. I have had to cut my work schedule down to 2 days a week due to vision issues. I take 60 or 90 Mg of Mestinon 4 times a day.

I met up with a fellow MGer from Ocala before my diagnosis and found it very helpful to me. Please message me if you would like to meet or email
Good Luck in your journey
Sandy