Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members

7,414 Posts

0 Online

islandlady2016 02/18/2016

Good Morning, new here ;-) Thankful to have found this group as this is all very overwhelming.

Just diagnosed last Thursday, GMG, have been feeling really horrible, like every symptom, not strong in legs or arms, and have really had a difficult time breathing and swallowing..until yesterday... The Dr. is ordering CT Scan. Currently only on Mesotin which only seemed to maybe take the edge off?...I understand dose hast to be adjusted etc. My question is...since I am not feeling bad, does it matter if I don't take the Mesotin?...I mean if it's more like a bandaid drug/advil to headache type drug, in my mind I would only take according to the symptoms....

Also, is this typical of MG? Does it kinda come and go that quick?...I mean the past week I could hardly walk across the room without laboring to breathe..... Should I be on the look out to feel like that again? Did I get healed??...Did I not really have it?
(tests confirmed)
Thanks in advance ;-)

xmas25 02/18/2016

I personally would take it since you don't know what the day has in store. Not taking it puts you lower on strength level. If you need to do something that yesterday was fine may take more strength than the say before . At least you have a litt in you. That's my opinion since everyday and everyone is so different. Take care good luck absorbing all there is to learn .is Dr increasing dose most start low and work up slowly.

islandlady2016 02/18/2016

Thank you, that makes sense. Dr. started with 60mg 2x a day, now at 3 x. Thanks again and best of luck to you.

Rhanson 02/18/2016

Hi and welcome to the group! Hope you get good advice here.

Mestinon is a lot like aspirin, it takes effect in about 30 minutes and lasts for about 3 hours then wears off. I usually took it when I needed it and skipped it when I didn't with my doctor's OK of doing it that way.

It does not help with the underlying disease, just helps with the symptoms. My best description is it is like taking aspirin for a brain tumor, you feel better, but it doesn't stop the tumor. Most of us start off with a mild version of MG and it keeps getting worse and we have to increase our prescription for Mestinon, and the doctor soon starts us on stronger medicine to treat the problem rather than the symptoms.
Good Luck
Russ

islandlady2016 02/18/2016

Thank you Russ! I also thought your response to another question, just recently, (can't remember the thread) was very informative! Thanks again and thanks for staying on to help us newbies!

HappyGuy007 02/19/2016

Hi, Welcome to our community... 60mg 3x/day is frequently the starting dosage. How much has your Dr. prescribed for you? Probably best to take as directed for a while, as most Dr.s appear to be capable of at least getting the initial prescription right. More, or less can be taken as needed. I was told by my neuro to use no larger than 30mg increments when increasing dosage. These increments need not be permanent, but may be purely situational i.e., taken after physically taxing activity, or when our immune systems are ramped up due to an infection like a cold, or the flu...... HG007

islandlady2016 02/19/2016

Thank you I am currently taking 60 mg 3x a day to increase to 4. Thanks again for your suggestion.

Barbel 02/20/2016

Symptoms come and go for me too. Mestinon is best taken as prescribed by your doctor. If you feel you need to adjust, it's wise to talk to him/her first. There are many factors that make MG flare: diet, over doing, weather, stress, and infections are just to name a few.

I'm glad you found this group. I've been here 3.5 years; this group is aersome. MG symptoms have leveled out, but I still need to rest in between activities. Remission is possible. Learn all you can, ask questions so you can be your own advocate. Best Wishes.

islandlady2016 02/20/2016

Thank you Barbel! Yes love the group ver compassionate and informative! So Thankful!.

xmas25 02/20/2016

Was interesting today I forgot mestinon at lunch grandkids were over,did grocery shopping with2 of them and really couldn't move at 3 pm when I realized goof. Took it and in about 1 hr felt better ,had to make Dinner and they were gone by 545pm. Don't normally feelsuch a boost its a gradual normal feeling. But I think I had gotten too low on mestinon. It was too weird a feeling

islandlady2016 02/21/2016

Thanks, I have experienced similar. Hope you were able to rest ;-)

annkemp 02/27/2016

Hey
I am concerned about your swallowing and breathing issues.
That is a serious problem.
If that is the case you need to be sure you see your neuro.
You need your mestinon regularly.
I went into crisis early in my disease. I was on a respirator of weeks.
Breathing issues need to be addresses. Swallowing issues also need attention.
We tend to have crisis early on in the disease because we aren't yet under effective treatment and we don't know what is going on or what to expect.

islandlady2016 02/27/2016

Yes, thank you annkemp, I think I was near crisis for sure. Now Dr. has increased mestinon to 2 4x a day. Breathing is much better.

Join the Conversation