Hi everyone - I hope you are all doing ok.

I just wondered what you would define the signs of a muscle as?

My facial droop is the most persistent and consistent symptom along with a droopy eye - all of my other symptoms fluctuate and vary much more. I always believed my problem was at the corner of my mouth as this is where the droop is most pronounced and seemed to stem from. Neuro number 1 also focused very much on the corner of my mouth and the muscles below and said that it was not caused by a weakness it was just my mouth suddenly deciding to pull that way?

However, Neuro number 2 has pointed out that I have very little movement through the mid section of my face and I have now realised that I cannot hold a wrinkle of my nose and it seems the droop comes from there causing the muscles to fall, weighing down my upper lip and causing my mouth to drop! It is actually quite a relief to begin to understand what my face is doing after 9 years if the focus being elsewhere! I now see the logic and cause of my problem!!

As I said - I cannot hold a wrinkle of my nose, on the first attempt the right side begins to fall after about 30seconds despite me trying my hardest to wrinkle! If I then release and try again to fire the muscles to hold again the muscle holds less and less time before it begins visibly shaking and quivering as it attempts to hold its position. The timings of this can vary depending on the time of day i try this etc - but the general pattern is the same? Can anyone relate to this? Is this muscle weakness? I am awaiting nerve/muscle tests at last so I am sure all will be revealed in good time but I just wondered what you all thought about this??

Thanks again!x

I have muscle weakness and my legs or hands will tremble if I over do it. It goes away for the most part once I rest. I tried to hold my eyelids wide open, they don't stay. They both slightly droop and my right eyelid twitches alot. I've noticed my facial muscles twitch too, and my right eyebrow seems heavy, like it's sitting on my eyeball. These are just some of my symptoms right now.

Unsure, I can relate. I can tell what kind of a day it is going to be by looking in the mirror and trying to smile. If my right corner lip turns up, it is going to be an OK day. If the right side turn down ward, it is going to be a bad day.

I use to have dimples on both sides of my face, now I only have them on the left. My face appears stroke like most of the day, so I do not make eye contact or even try to smile so it is less noticeable. Of course all these symptoms are better after mestinon and get worse as it wears off.

Early in my MG days, I had no problems with my smile. It only happened as my symptoms progressed. My eyes on the other hand are a constant bother. They tremble and quiver all day long. I have no doubt it is muscle weakness.
Don't let the docs stress you out. I always schedule my mestinon so it is wearing off at the time of my doctor appointment so they can see what I am really like.
kathie

Thank you both for your replies! Kathie, I look like I have had a stroke too (and have been asked about my "stroke" more than once by strangers!) and I also only have dimples and smile lines on my left side these days! I suppose it's cheaper than Botox?! At 32 it's not the best look though!

I just feel so confused by my symptoms - Neuro #1 dismissed me twice in 9years saying weakness was not the cause of my symptoms and refused to refer me for muscle/nerve tests and Neuro #2 referred to my problem as "weakness" but said the "only fly in the ointment is that your facial weakness is one sided where we would expect both sides to be affected" I was just curious to see what your experiences of weakness were and whether this seemed to fit? I know I have asked previously and many if you kindly replied to say your facial problems are also one sided - or predominantly one sided. I will say if I become very tired or push myself too hard my mouth hardly moves at all and I just mumble through the unresponsiveness and rest until it resolves!

Thanks again for your help.x

This seems like a uninformed opinion. MG ocular/facial symptoms are notoriously one sided. How could a bonafide neuro say such a thing? MG is not so rare for a neuro to make such a comment. Am I missing something? I suppose the docs are under a lot of pressure to look like they know everything in an instant.

Unsure, I'm wishing you good luck with neuro #3.

Thanks gr8ful - to be honest this is the second time I have been told this- I spoke to a Myasthenia Specialist Nurse over the phone who said exactly the same thing and she would expect both sides to be affected- maybe it's on the Uk checklist of things needed to diagnose MG! . Neuro #2 is a Neuromuscular Specialist who takes National referrals here in the Uk to his Myasthenia Clinic and has also been involved with research into MG with Angela Vincent! In his defence he said there is nothing else it could be and my symptoms are highly suggestive of MG excepts this one sidedness - it's just getting a test to prove it so I can hopefully have some help that is the hard part.

As I've said on a previous post - I wish these Neuro's would all get together and decide what symptoms determine a diagnosis of MG and actually try to help people instead of just discounting it! They haven't got a 100% reliable or specific test and until they do there needs to be some consistency to what is considered MG symptoms not just their interpretation of the list which seems to vary more wildly than our fluctuating symptoms themselves!!

I honestly have heard that symptoms, especially facial muscle weakness, can sometimes be one sided. If you look at a lot of the ocular issues, it's usually one eye that is impacted more severely. I have pstosis but it's mildy bilateral. As far as facial weakness, sometimes my cheeks and the muscles around my mouth feel weak but there is not obvious droop. There's just a weird sensation of weakness.

This is how I look at 8am after 8hrs sleep and again at 3pm to try show you all what I mean!

I actually look way more unsymmetrical than that when I am tired. My right eye closes way on down. Apparently my entire face looks mad because people think that I am upset about something.

Unsure, you are compensating by raising your left brow otherwise your ptsosis on the right side would be even worse.

I do the same. Your facial symptoms are just like mine, raising one eyebrow to compensate the ptsosis, droopy corner mouth on same side as ptsosis. All my facial issue have been attributed to the MG. They wax and wane with all the other MG symptoms. Mestinon make them better temporarily as does rest.

Looks like MG to me!
kathie