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 09/16/2013

Hi everyone - I hope you're all ok and had a good weekend

I just wanted to update you and ask you for any words of wisdom/advice/thoughts as I have really mixed feelings about my appointment today??
I arrived for my 8am (!!) appointment after a 2 hour journey feeling pretty ok, My Neuro (Who I am so grateful to have found!) said my face and eye looked droopy so he was hopeful that the tests would confirm his suspicions about me having MG. However, he did point out there were other tests and how ACHR testing (for which I am negative) is the main one, then Nerve Conduction Studies/SFEMG, MuSK testing and Tensilon Tests. He also said there are other antibodies which have been identified and linked to MG which they are currently unable to test for and so diagnosing can be tricky.

I had an hour long (Uncomfortable!) study of my feet, lower leg, hand, lower arm, shoulder and face and despite almost all of my muscles being very shaky throughout and most feeling very weak after the tests showed nothing - even in my face where the weakness never really resolves itself!! I am baffled!! How can they be clear when my face visibly does not work?!?! To be honest my Neuro was lovely when he gave me the results - he said he was frustrated and said he can only imagine how frustrated I must be!

Despite the test results he continued to do the MuSK antibody test and sent it away to a special lab in Oxford and (Thankfully) has written to my GP to prescribe a Therapeutic Trial of Mestinon - which I am so grateful for and just pray gives me some relief! He is also ordering an MRI of my face which is apparently very rare?? I need to look this up as I don't know why it is rare? And I will see him in another 3 months to review the Mestinon trial.

So....I am confused, on the one hand I am completely gutted and confused as to how the tests showed no abnormality when my face is clearly not working and with the other struggles I have? But on the other hand I am so grateful to him for continuing to test and for prescribing the Mestinon!! I would have loved to have had some answers but in reality if the medication works I really don't care about having a definitive diagnosis - I will just be so grateful to have the chance to feel (and look!) a little better!! I am sure I have read that those with MuSK antibodies don't always respond to Mestinon? And I wonder if anyone here is positive for the MuSK antibodies who tested negative for the Nerve/muscle tests?? I'll search the other posts on here for any information.

Sorry, this is a bit of a jumble, everything is still whirling around in my head, but I would be so grateful for any thoughts you may have or any experiences which may help me to get my head around this all! I find myself wondering if today was a positive or a negative outcome?!?!?

Thank you all again.
Eve.x

vieve 09/18/2013

Oh, man, I know that feeling of failure! I didn't have trouble getting diagnosed, so mine wasn't a feeling like I failed a test by not showing the results to make a diagnosis. But for months when I first was diagnosed I would feel slightly angry when my ivig would wear off, that I realized was a sub-conscious feeling of failure that I wasn't magically better. And then when my doctor would ask how I was doing I under-represented my symptoms to him because it made me feel so bad about myself to tell the truth, which is that I felt terrible. Classic denial, I guess; I just couldn't believe that I was sick. It was like I was going through the grieving process all over again each month since the ivig worked so well, when it wore off I had to start over. But don't be hard on yourself, Eve! The doctors have these limited, imperfect tests that they use; this disease is so variable and affects each of us differently, so it doesn't always fit into their few rigid guidelines. It's the testing process that's imperfect, not whatever you're doing. It sounds like your doctor understands this and that's great. I know it would be satisfying to have some answers and have validation from your doctor, but don't get discouraged until then.

unsure81 09/18/2013

Thank you Vieve! It's so nice to have someone who understands - that is exactly how I feel! You explain it better than I understood it myself!!

I think I am just so scared that history will repeat itself and my Neuro will give up when nothing shows up on the tests and I'll be left alone to get on with it - feeling and looking awful! I then worry that everyone else will slowly turn and start to think there is nothing wrong with me and I will feel like a burden to everyone like I did last time. I too play down my symptoms, my Dad always comes to the appointments and tells me off for it! But I don't want to complain and my last Neuro thought the toned down version was ludicrous so he'd have probably sectioned me! Lol!! I just feel I'm letting everyone down by not giving the test results we all need to make this go away? I know it is beyond my control, but I feel responsible and like its my fault.

Thanks again Vieve - it's nice to know I'm not completely mad or irrational to feel like this! xx

vieve 09/18/2013

My first neuro diagnosed me pretty quickly, but he had this way of being really abrupt in appointments that made me feel like I was wasting his time and so I tried to give him what he wanted, by saying, "No, that's all! I'm fine, really!" I didn't feel confident enough to command more of his time or attention. Now that I have a doctor who I really like and trust, and who is more patient, it's easier for me to talk to him and be honest, but I still sometimes have to give myself a pep talk: "He's really smart and good at his job, and he wants to help you! He's working for you but he can't help you unless you ask for it, so give him all the information he needs to help you out the best that he can." But sometimes I still secretly want to say, "No, I never have trouble holding up my head anymore!" just to see him smile and tell me that I'm going great.

And sometimes I feel this weird contradiction: I want to downplay my symptoms to people I know to reassure them and because I'm afraid they won't believe me anyway, but then I feel alone when they don't realize how much I'm struggling since I wasn't honest with them about it.

I feel like it just takes time to get used to being sick, plus I had to learn how to talk to doctors in general...I hate asking people for help or admitting that I'm struggling! Your situation sounds more complicated than mine was, though, since you're still trying to get a diagnosis. And it doesn't help that your first doctor thought your symptoms were all in your head! Try to forget about that guy. It sounds like your current neuro isn't like that other one; this one is trying to help you and all that's left for you is be honest and let him help you. That's the most you can do. Because you do deserve for someone to help you!

unsure81 09/18/2013

I feel like I could cry reading this as this is exactly how I feel! Especially the part about how you play your symptoms down to others as you're afraid they won't believe you anyway - I do this a lot! I've almost given up trying to explain the fluctuations and strange symptoms especially with having no diagnosis as I feel it just reenforces their theory that Its all in my head!!

Thank you Vieve.....it is such a relief to know that you not only understand but you actually feel the same! I am so grateful for you taking the time to post :) x

vieve 09/18/2013

Isn't a relief to know that others feel the same way? :) For so long last year I thought I was a huge weirdo who couldn't figure out how to communicate. But now I realize plenty of people have this trouble and it's not weird. When you're going through something most people haven't experienced, and you have to change your ideas about your own physical or personal identity, it's hard to know how to talk about it.

GreenMarie 09/18/2013

Hi Eve,

I was neg for ACHr but I responded so positively to the mestinon that my doctor did not do a musk test as he said that people who are that postive to mestinon are rarely musk positive as musk does not usally work as well for musk positive patients. My daughter also is ACHr negative but is having a positive response to mestinon.

I do not know much about the single fiber testing. I had one that was done a few years back that was negative but when i read the way the test should be done I realize it was not done on a wamed up muscle and not on my weakest side. That part is confusing to me.

My neuro belives research lags behind and all the antibodies have not yet been discovered. All I know Is that mestinon has changed my life beyond belief. I have weaned off a year of supplemental oxygen.

Medicine is in it's infancy. There is so much more on the horizon. All the answers are not in a text book. It takes a doctor who understands this to realize that response to medication says a lot.

I hope you can get the help you need and I hope too you get more answers as time passes.

Nice to meet you here... Marie

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