Musk test worth $2500 out of pocket?
 

I have tested negative for MG antibodies and the EMG was negative but 2 doses of 60 mg Mestinon helped lots! Anyway, my insurance is giving me hard time about covering the Musk test. Since you can test negative for Musk and still have MG why pay $2500 (on top of monthly insurance premium of $1200.00)? Why not just use mestonin if it is helping? Am I missing something?

Thanks for any insight and advice.

I wouldn't spend the money myself. Mine was negative. Everything is negative. My neurologist still says that I have MG.
The insurance will probably pay for the test eventually if they keep asking. I would be sure that they pre-approve it though.

No, I would not pay for it. However, please note that MuSK MG ordinarily does not respond as well to mestinon so if you're getting almost complete resolution of symptoms with the use of mestinon, you very well may have a different antibody causing the problem. It could still be MG, however.

If you can get into a neuro who works in an MDA clinic, your worries of copays and uncovered stuff will be resolved. MDA pays for all of my office visits--even the copay! They paid for my test.

Keep hanging in there!

Steph, before you make a decision, ask the lab if they'll give you a self-pay discount. Labs have two different prices for the tests they do: the official price, and the price they've contracted with the insurance company to pay. If you ask, they might give you the contracted price instead, which can be a fraction of the official price.

Abby

Steph,
I'm not sure if this will help you or not, but Athena, the lab that does the MUSK testing has a patient protection plan. I used it when I had the MUSK testing done. It significantly limited the cost I incurred for the testing. My insurance plan did not contract with Athena.

I'll try to post the link here, but if it doesn't come through just google Athena and patient protection plan. Hope this helps.
http://www.accessathena.com/patient-...tion/index.jsp

Cate

I called Athena directly to ask about the cost of the test, since I couldn't get a straight answer from my insurance on whether they would pay or not. They told me the test was $1300 if the insurance didn't pay. However, if I paid myself, up front, without even trying to run it through the insurance, it would only be $800-something (I forget exact numbers).

I looked up their phone number on the internet. Got the test code from their website since my doc's office didn't bother look it up for me. (which is why I couldn't get an answer on whether they'd pay, doc's offices wouldn't be bothered to deal with my insurance co, and as a patient, all I can get out of them is the standard "IF it's medically necessary..." which I have learned means absolutely NOTHING.)

So you can look into it yourself, and find a better deal on the price. Don't know where you got the $2500 figure (someone padding the bill?), but the lab itself gave me the lower numbers above just 2-3 months ago.

good luck.

That's weird.

My neuro recently ordered MuSK and even though I have insurance, Athena called me right away and said "we will be covered as out of network with your insurance (coverage at 65%) so you'll need to enroll in our patient protection plan".

Straight out of pocket was going to be $1300 (est). Through my out of network coverage it would have been $450-some. Through their patient protection plan it was like $260.

... and of course in the end it came back negative.

Must know I am a lawyer! Lol

who knows why they told me $2500 but I was ale to get all but the anti striational test done by quest

Oh MY! I do feel bad now! I complained because where I live in Europe I had to pay 77 dollars via a private doctor.
Had my normal doctor agreed to refer me it would have been free!
But then again I did have to spend money on hotels and flights to another country to see a neuromuscular specialist who knew how to test fatigable weakness in the office!!!

This week I´m going to remain grateful for most things, regardless!

I had this test done, and it was worth it for me, because they found I was positive for MuSK. Mestinon did NOT work for me, both times I've tried it. I got the impression from my Dr though that he wasn't surprised when he saw I was MuSK positive and the medication not really working.

I thought it was more like $1,500 but I remember when my mother called she had a hard time with Athena getting a straight answer about payment, what was covered/not covered and all that. Anyway, it is very expensive, but it may help you with an answer. Good luck :hug:

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.......:)