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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MuSK

madoak
madoak

Hello, following an earlier post, I still have no clear diagnosis, but having seen my neurologist a year ago, he has suggested that I trial mestinon after having a few more tests.  This was after not being able to speak, swallow or breath very well after a recent foot operation.  Currently having very bad breathing problems and speech is bottoming out at work every day, swallowing also pretty bad in the evenings. The worse thing for me is the head drop - have very weak neck indeed.  Have tested negative to Acetycholine antibodies, do have nerve demyelination (no clear cause).  Thing is, he has never suggested testing for MuSK antibodies, so I left a message asking if this could be done.  What do you all think.? Life is hard- feel so neglected and have hands that are so weak it's ridiculous. Have been like this for 6 years now.

madoak
madoak
Sorry meant to put saw neurologist one MONTH ago. Also, that am having nerve conduction studies repeated.
Rhanson
Rhanson
Did you try mestinon? If it works you are very likely to have MG. If it doesn't work, less likely,. but still possible. Mestinon is like an aspirin in effect --half an hour and it kicks in and lasts for about 3-4 hours then quits.
There are several antibodies that can be tested for in MG.

Are you being treated for nerve demyelination?
Sorry things are so difficult for you.
Good Luck Russ
madoak
madoak
Yes, I am going to trial Mestinon when I go back to see the neurologist on the 31st July - thank goodness. I don't know why I have nerve demyelination (what is causing it) and what to do about it. My G.P. seems totally ignorant about what is causing it whereas the neurologist says cervical spine injury - neither seems right as it is getting much worse. My G.P. actually said it wasn't a problem which is crazy as if nerves don't work, you effectively don't work! I do think that I should be tested for the MuSK antibodies too.
Anushka_W
Anushka_W
Hi there!
Yes, definitely try and get tested for MuSK. Strange that
the neurologist did not already prescribe mestinon just to test it out.
You might want to go to another neurologist if the Mestinon proves to help and the neurologist is not being helpful in doing other tests etc. I have MuSK MG and none of the normal tests were positive (except for testing for MuSK, which was). Thing is, I live in South Africa and was crazy expensive to do the test, so had to motivate to get it tested in Germany. Not sure how it works where you are.
Best of luck!