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