This thread sadly proves again that MuSK myasthenia is one of the most neglected diseases.

Patients with Musk are "expected" to be like a very different and much more common illness, with a similar name-AchR+ myasthenia.

Until 10 years ago, this disease didn't exist at all. (which means that patients with MuSK MG were not ill and had a psychiatric illness which made them think they were ill, even when they were hospitalized in the ICU and required respiratory support, as has been bravely depicted in Chloe Atkins' book). Even now, many neurologists still doubt its existence and don't routinely check for it.

Patients with MuSK are more likely to have normal test results (including SFEMG), are less likely to have a positive tensilon test or respond to mestinon. So, many do not comply with the criteria for MG. I don't know (and don't know how to find this information) how many of them are told that there is nothing physically wrong with them.

They are also less likely to respond to the commonly used treatments for MG (as those treatments were studied on patients with AchR+ MG which is a different disease in its mechanism and clinical manifestations).

Patients with MuSK are more likely to have muscle related side-effects of steroids, they are more likely to have severe exacerbations and crises even on treatment.

Yet, there are no clinical trials in MuSK MG looking for better management approaches. There are also no efforts I am aware of being done to improve the ability to diagnose this illness.

I find it hard to believe that even a simple serological test (which probably doesn't detect all the patient with MuSK) is not yet done routinely and paid for by insurance.

But, this is not surprising when in the official site of the MGFA clinical overview it is written:

And then the future of MG treatment-

Or in other words-MuSK MG-who said this illness really exist and even if it does why should we care about it. Why should it concern us that there is "emerging data" (for more than 10 years) showing that this a different illness than AchR+ MG which requires a different diagnostic and management strategy? Isn't it much easier to " stick" those patients into a diagnostic category that we know, and if they don't fit send them to seek their fate elsewhere?

And as this is the official site of a patient organization, I assume that MG patients don't care either.

I was devastated when my Musk test did not turn out positive. I was sure it would. I was equally as cross with the medical system where I live that I had to pay for the AchR as well as pay for the MuSK.

In Europe I pay around 3,000 dollars a month in taxes that are supposed to cover such tests. It was the principle of paying for these tests with a private doctor when my regular physician didn´t believe me and that is what I disagreed with. Again on principle I refused disability payments that would have been based purely on psychosomatic grounds and instead asked my employer for reduced employment each year over a 4 year period.

The MuSK test was the last straw in a chain of events from a context involving doctor and patient butting their heads together (I must admit!!) It wasn´t about the MuSK it was about us.

The few blood tests we know of in MG are like small pieces from a bigger MG jigsaw puzzle. It is thanks to you and others Alice that we know these pieces are not enough to make the whole picture. It is also thanks to you Alice that a lot of us are able to manage with seronegative myasthenia or even without a diagnosis. I will be disappointed if my SFEMG turns out negative and disturbed by all its negative implications as a result – however, I will remain empowered rather than helpless precisely because of your extensive research, knowledge and diligent open minded approach that will eventually reach out to many more in the future.

I´m continuing doing my little bit over here by trying to educate doctors I come across that a negative AchR and negative MuSK do not necessarily form the basis for a psychiatric diagnosis!!! :Doh: If it takes a trip, a test, a speech, a letter, a demonstration :Demonstration: (at the insurance companies!), a new way of thinking, anything that would help - then count me in - I´m there, whatever the cost.......:)