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...
I first had drooping of the eyelids, especially the right one when tired. Then I began having difficulty breathing without a lot of effort. As if too much trouble to breath.
Along with weakness, I have suddenly developed tremors of the hands and twitching in the lower face, lips and chin. I do not have an official diagnosis yet. I have been seen my a neuromuscular doctor who performed a neuro exam in the office and suggested that I may have MG. I also had a positive emg and nerve fiber test. My bloodwork was negative. These tremors of the hands and face have just started in the past few days. I am not on any meds for MG at this time. When I am having the tremors and twitches, I am also extremely weak and shaky.
Is twitching part of MG symptoms if not taking any meds for it? Thanks for any info.
Along with weakness, I have suddenly developed tremors of the hands and twitching in the lower face, lips and chin. I do not have an official diagnosis yet. I have been seen my a neuromuscular doctor who performed a neuro exam in the office and suggested that I may have MG. I also had a positive emg and nerve fiber test. My bloodwork was negative. These tremors of the hands and face have just started in the past few days. I am not on any meds for MG at this time. When I am having the tremors and twitches, I am also extremely weak and shaky.
Is twitching part of MG symptoms if not taking any meds for it? Thanks for any info.
Welcome!
Although? We will all be sorry - to hear why you are here.
There are many of us, on this support group. We all help each other, and we will try to do the same for you.
Most MG patients would tell you: they have minor twitches & trembles, with what is called generalized MG. This is consistent with weakened muscles (weakened and exhausted muscles, because they receive inadequate nerve signals).
Twitches & trembles happen - even with treatment (lots of reasons).
But twitches & trembles - would be much more noticeable -
- if you are - not being treated!
Why the delay in treatment? In prescribing, some meds for you?
Positive results - on EMG tests? Are considered a fairly good indicator - for MG.
There are a variety of meds that can help.
A short trial of Mestinon, a very common med, used to fight MG symptoms? Would give you - a quick indicator.
(Remember: Mestinon is not a cure, it only treats symptoms.)
Many diagnosed MG patients - start with Mestinon.
Improvement in your symptoms, while taking Mestinon?
Is almost a sort of diagnosis, in itself.
As Mestinon, almost strictly works?
Only against MG or other MG-like syndromes.
(there are exceptions.)
If you are prescribed Mestinon?
Don't start with a full-blown regimen of treatment.
Ask your Neuro - for a schedule.
Where you steadily work up, towards a dosage that works well for you.
** Important.
You must rest, as much as possible, especially - if you are not being treated.
- Ross
PS:
keep an watchful eye, on these twitches & trembles.
If they remain minor? Well - that's annoying as can be.
But usually no cause for alarm.
If these twitches & trembles - become severe?
Notify your Neuro - and seek treatment.
Lots of people will be gone, for the long weekend.
Hang in here.
There are lots of great people here, with lots of good advice.
** At the top of the page, on your posting?
Where it says: ''Search - Discussions''?
(try this ''Search - Discussions'' too. Lots of good reading.)
Well, just above the ''Search - Discussions''?
Way over on the right? Is an Icon, named ''Groups''.
Also click on ''Groups''.
More good reading in there.
- Ross
And for the advice. I just had a follow up with a surgeon on Tuesday for another issue, and he questioned why I was not on Mestinon already. He also wanted to know if I had had a CT scan for a possible thymoma. I don't know why the delay in these things but I am going to try and keep myself together till I see the neuro guy again on Thursday.
I am so glad I have found support forums on the internet so I don't feel like I am losing my mind with all my crazy symptoms that come and go.
Hate this long weekend, though. I was thinking if I did have to go to the ER during the holiday, I probably would not get top notch care with a most likely skeleton crew on board. Thankfully, since my new twitches have arrived, my breathing seems to be fine.
Today I am fine and have more energy than usual, but I am trying to stop myself from going all out like I usually do then crashing and burning.
Again, thanks so much for your help and support!
Linda
Twitching is a pretty popular topic of discussion on here. We have, I think, come to the conclusion that while mestinon definitely can cause twitching, so can fatigue. It's difficult when the treatment can cause side effects that are consistent with the disease.
I agree with Ross and your surgeon, the delay in treatment when you have the positive diagnostic testing of emg is puzzling. There are MANY of us (me included) who have negative blood work and even negative emg but still have MG. If your neuro doesn't bring it up, please ask about starting mestinon.
Let us know how you are doing.
Cathi