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...

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unsure81 05/17/2013

Hi everyone - I just wondered how you all get/got on with those resistance tests the Neurologists do? My symptoms fluctuate and get worse with activity, my most persistent symptom is my facial droop is always there and will go from a drop on my top lip to a full one sided droop which affects my eyelid. I can move my face even at its worst by concious effort it usually feels heavy and takes effort but doesnt move automatically when I talk etc. My neuro always asks me to purse my lips, blow air into cheeks etc which I can do for the few seconds he requests. I have problems with my legs when symptoms are bad and he has done the resistance tests when they have been ok and said the strength seems fine (which I agree it is for one test and when I am not having a bad day with them!) I don't know how they would be if he repeatedly tested them though!

So, I wondered how you all find them? I have just had a negative achr blood test and he has asked to see me again at the end of the month and to contact him if my symptoms get worse again before then. I have requested an EMG and am waiting for his reply but just wondered if maybe you might be able to tell me if you think my problem might not be MG related after all??

Thanks again to you all for taking the time to read and reply.x

deleted_user 05/17/2013

He should give you Mestinon as a test, or maybe you should find a neuro knowledgeable on MG. I am sorry you are suffering the diagnostic woes of a seronegative.

unsure81 05/18/2013

Thanks for your reply Elinora :) I just feel like this is complete dj vu like when I pursued this 9 years ago I think! I even got to the point where I began to feel that it was in my head back then and have spent the years disbelieving what my body was telling me on the flare ups ( which were thankfully mild in comparison to then and now!) to the point of thinking I must have some sort of anxiety because my body couldn't possibly be feeling the way it was - it was just all in my head! I have to say, 9 years on, I know that is not the case and I know am no Dr but from the research I dine this is the only thing that fits and I had a HUGE relief finding you all as, for the first time, I realised it wasn't just me having these strange, fluctuating symptoms and maybe there is an answer and a way to feel better!

I would love him to try the Mestinon I hear you all talking about, and I will have to ask him but I'm not sure that he would give me anything without some sort of positive test? I'm in the UK and we don't seem to be able to choose who we see or request anything really - we just get what we get! ( and I am currently paying privately!) he still hasn't replied about doing an EMG and I feel if I am paying why would there be an issue?? My Neuro has been very thorough in the blood work he has done but no MuSK test or Muscle testing has been mentioned despite him stating he is looking for Myasthenia! He is very old-school but also the top Neuro where I live but if I get no where I will take your advice and look for another one - maybe a Neuromuscular Specialst?

Thank you again for your help - I hope all is good with you :) x

deleted_user 05/18/2013

Here in the US Mestinon is often used as a test when people have negative blood work! Also, did you mention SFEMG? You might also request the test for LEMS. Good luck to you. Hope you can hang in there. Hopefully someone more knowledgeable than I will chime in! :-)

unsure81 05/18/2013

Thanks again Elinora :) I didn't specifically ask for an EMG, I just asked for muscle tests as I'm scared he might say no if I look like I know too much or he feels I'm telling him his job! Thanks again for your advice - I'll look into how Mestinon is used over here and see if there is a chance they will let me try it!

Thanks again.x

deleted_user 05/20/2013

really good MG neuros will not just do a quickie one-time resistance test but will see how muscles work with repeated use- i.e. having you lift your arms 40 times or stand up from a squat or seated position 20 times. neuros keep telling me that my leg strength is just fine- of course it is after I've been sitting in the waiting room for an hour to see him! one of the characteristics of MG is FATIGABLE muscle weakness so it's important for the neuro to test for it. I notice that I have much more difficulty standing up for the 20th time at the end of my son's speech awards ceremony than for the first couple times at the beginning.

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