Hi Happy,
Your post really resonates with me! I told people I was in a honeymoon phase my first year on Mestinon. It was like getting my life back - back to biking, cross-country skiing, even mowing the lawn again. But the mestinon is working less well and for shorter time.

I started having swallowing issues in November, a year after the start of the Mestinon. Unfortunately, my "MG neuro" says it isn't MG afterall but at least left me on the drug. So now I play a waiting game for a different neuro with mitochondrial disease experience (likely a year wait) and hope I don't get significantly worse in the meantime.

But I am an optimistic sort and hubby and I have booked a summer Baltic cruise (cool weather there!) once he got a "looks like your Crohn's is back, not cancer" diagnosis. Who knows if we'll be able to travel when we retire in five years. We have great health travel insurance through work and bought even more, as my medications hadn't changed, even though my "non-diagnosis" of MG was removed.

Do you see a neuro for your MG? My GP is keeping busy treating all my other diseases/autoimmune issues and I am his only "maybe MG" patient. Make sure your GP follows careful protocols if he adds prednisone to the mix. Most other AI diseases start with high doses first but my reading shows that can aggravate MG.

Good luck on your month of waiting. I hope to feel a little better in a month too once I can start getting natural Vitamin D; my increasing weakness happens every winter and I feel better every spring!
Flutebell

Sorry to hear that mestinon is not working as well.

When this happens it may mean that your receptors have been destroyed to the level that there are too few left--setting the stage for an MG crisis. The waiting a month may not be a safe thing to do in that case. Be careful.

Prednisone, at high doses, can cut the attack on the receptors, often in a few weeks, but sometimes taking much longer. This allows the receptors to grow back.

Good Luck

Thanks Friends, GP, and Neuro work in concert on my case, among others. They have 6 MGers in common that they treat. GP said it has been a very bad yr. for flu, common colds, etc., in our area and that I may have been weakened by a series of infections of this ilk. Yet, blood work did not indicate the presence of infection... So, perhaps, no infection(s) ATM, just the aftermath... lingering weakness. I am hoping this is the case... Looking forward to," la stagione dei fiori." ....Spring!!

The good ol' Mestinon Honeymoon phase. I've been riding that gravy-train for 2 years now.

Also starting to notice it may not be as effective as in the beginning.

Mentally preparing for Cellcept, and maybe the "P" word as well!

Take Care :)

If you're within the first two years of symptoms of MG, studies have shown that Prednisone can delay or prevent the onset of Generalized MG. That's the one reason I still take Prednisone and it's the only thing I take.

There are measures you can take to offset the sides of Prednisone. Feel free to DM me if you would like to share ideas.

Stay Happy...

Thanks Deal, GP, and Neuro figure I've had MG for about 5 yrs, based on my med history/account. I believe they've got it right. Momentary episodes of dbl vision started at least 5 yrs ago, prob 6... Haven't had any serious dbl vis in quite some time. Mirabile Dictu! I am actually feeling much better over the past few days... Have no clue as to why......... Weather? Over an occult infection? Reduced stress level? ....Maybe tomorrow I'll be choking on my morning omelette????? At this point, I have decided that whenever MG shows its ugly face it will summarily receive the back of my hand, and I will simply do what needs to be done... I WILL NOT WORRY!

Sounds like a plan. Wishing you well my brother.

I waited and went down hill so fast I was on respirator.
We can go down hill fast.
Based on my experience you would be best to go on low dose of prednisone.
I was exactly where you are and I didnt want to do prednisone.
I ended up in hospital for 6 weeks .
About 2 I was on respirator.
This disease doesn't go away as we would hope.
I didn't want to do prednisone either and insteAd of treating my symptoms with 10 to 20 I got so bad so fast I was on 60 of prednisone to live.
This is a very serious serious.

I walked into the hospital and within 4 hours I couldn't move.
Please be careful if you aren't getting better with rest.

Thanks Anne, Another good breakfast experience today... 90 min. after 60 mg Mestinon I was able to finish my spinach omelette and drink my coffee with very little difficulty. No choking, no nasal regurgitation. Happy! Your points are well taken. Any signs of breathing difficulty at all, and I will be off to the hospital(20 min drive), or will call first aid squad in town(1 min from my home).