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MUSK Antibody test
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forgetfulagain posted:
Hi folks,

I was wondering if anyone can help me with this MUSK antibody test for myasthenia gravis.

My neurologist's office says that they want me to do this test with this Athena labs as they 'hold the patent' on this test. But when I looked around, it seems that the Cleveland Clinic, for example, does the same test - the name, cpt codes, methodology are all the same as the Athena test.

Does anybody know if there's any truth to what my doctor is suggesting about this supposed patent? Athena test will cost me around $1400 while the Cleveland Clinic test would be completely covered by my insurance.

Any thoughts?

thanks.
Reply
 
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susiemargaret responded:
hello, F --

i found a website called "myasthenia gravis -- the resource" (see PS1), http://www.freewebs.com/myastheniagravis/main.htm , which has a discussion of tests for MG at http://www.freewebs.com/myastheniagravis/testing_for_mg.htm . about halfway down on the testing discussion page is a section entitled "MuSK antibody test."

among other things, that section says that "athena diagnostics is the main lab that handles MuSK testing" (PS2) but that "there are other labs that do this testing ... many of them are university- or hospital-related labs." it lists specifically the cleveland clinic reference lab (PS3) and the neuromuscular clinical lab at washington university school of medicine (PS4). i believe the mayo medical laboratories (PS5) do this test also.

on various websites, i have seen the cost for this test as from $245 to $900 in the united states. shockingly, on every lab website for anywhere in england, the cost is less than $100!

if i were you, i would call the three labs i listed above and get the latest info from them. this $1,400 price because of athena being the patent holder and therefore the only lab entitled to do this test is ridiculous, in addition to not even being true (PS6). whoever told your dr this should be ashamed.

i send you caring thoughts and hope you will keep us posted on what you do next and how it turns out.

-- susie margaret

PS1 -- there is nothing on this website that identifies its authors, associated institutions, or date of creation. i don't know what to think of this website, frankly, but i offer the info from it for your own judgment on its credibility.

PS2 -- athena diagnostics, inc., 4 biotech park, 377 plantation street, worcester, MA, 01605, phone 800/394-4493 toll-free, phone 508/756-2886, fax 508/753-5601, http://www.athenadiagnostics.com/content/index.jsp , turnaround time 7-14 days. according to their test catalog, the current name of the MuSK test is the "MuSK quantitative titers antibody test (482)"; the "MuSK antibody test (470)" is listed as "discontinued." i don't know what this means relative to the test that athena administers versus the test that other labs administer; if the codes are the same, it seems to me that the tests would be either identical or equivalent, but i am not a lab person or a medical person.

PS3 -- cleveland clinic reference lab, client services, 9500 euclid avenue, L-15, cleveland, OH, 44195, phone 800/628-6816 toll-free, phone 216/444-5755, fax 216/444-0460, http://portals.clevelandclinic.org/reflab/Home/tabid/4036/Default.aspx , e-mail clientservices@ccf.org , turnaround time 9-16 days. in their test catalog, the name of the MuSK test is the "MuSK antibody test."

PS4 -- washington university school of medicine, dept of neurology, neuromuscular clinical laboratory, 660 south euclid avenue, campus box 8111, st. louis, MO, 63110, phone 314/362-6981, fax 314/362-2826, http://neuromuscular.wustl.edu/over/labdis.html#labtop . the director of the lab is alan pestronk, phone 314/362-6981, e-mail pestronka@neuro.wustl.edu . the only reference with "MuSK" in its name that i think i can identify as a test is called "myasthenia gravis, serum IgG binding to MuSK," http://neuromuscular.wustl.edu/mtime/mgdrug.html#ref4 , but i'm not even sure about that!

PS5 -- there are several locations for mayo medical labs, http://www.mayomedicallaboratories.com/customer-service/contacts.html , but for their overall customer service dept, phone 800/533-1710 toll-free, phone 507/266-5700, e-mail mml@mayo.edu . their catalog lists the name of the MuSK test as the "MuSK quantitative titers antibody test"; turnaround time is 7-15 days, and cost is given as approx $835. interestingly, the mayo website says that athena actually performs the test -- quite a difference between mayo's charge of approx $835 and athena's charge of approx $1,400 for the exact same work by the exact same lab!

PS6 -- athena does hold the patent, but that does not confer exclusivity on doing the test.
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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forgetfulagain replied to susiemargaret's response:
Thank you so much for your reply. This is a very strange situation because when I told the nurse/tech that I will do the test with the Cleveland clinic she called back in a few minutes saying they can do the test right at the hospital. I'm not liking how this office is handling things because this isn't the first time I have felt fleeced by them.
I think I'll find another dr as soon as I'm done with these test.
Thanks again - it was great advice!
 
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susiemargaret replied to forgetfulagain's response:
hello, F --

have you considered finding another dr before you take this test? whenever i get that uneasy-queasy feeling in dealing with someone, i'm out the door.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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forgetfulagain replied to susiemargaret's response:
You know I would have already but several doctors recommended this guy specifically...
 
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susiemargaret replied to forgetfulagain's response:
hello, F --

did you have the test?

how have you been feeling?

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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forgetfulagain replied to susiemargaret's response:
Hey,

I finally had the test but haven't seen my doc yet. The nurse says it was negative. That's good of course, but I wonder if they'll ever figure out what is wrong...
My biggest problem right now is the ptosis and the muscle pain/fatigue is moderately annoying...
I'm definitely out of ideas. He's done a muscle biopsy for mitochondrial disorder as well and that was negative.


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