Sandra,
So glad to hear of your good response. Last I heard MUSK + MG has the best record with Rituxan ( and maybe the other way around , too). I wonder if those who are positive for LRP4 might also respond as well, but I guess we will not know until the test is more widely available for those of us who are negative for both AChR and MuSK antibodies.

For those who are new, there are several antibody tests not commercially available--the LRP4 tests for antibodies to an earlier step in receptor assembly than MuSK. b.

I was only tested for AChR and was negative but my response was so positive to mestinon that my doctor decided not to do the MUSK test. He stated that most people that have a huge positive effect from mestinon are not usually MUSK positive and since it is a very expensive test that would most likely not yield positive results he did not order it.

My understanding is that different drugs are usually helpful for MUSK positive individuals as B points out. I am just glad you have found a medication that is working so well for you! Marie

Hello, I did forget to mention I also had 17 Plasmapheresis treatments done! I am in a clinical trail at Yale Medical Center with 9 other patients...I do appreciate how the doctors say that the MuSK blood test is expensive, well it is covered under insurance and Athena Diagnostics was purchased by Quest Labs. There are 300 MuSK patients out of the 75,000 MG patients...I am so sure that there would be more if the blood test would be done on all MG patients...who would of known this is the path that I had to do to be able to walk and talk again....

I am MuSK positive. Have the gamut of symptoms.. Fortunately relatively mild thus far, but needing more help lately.. Heading to neurologist again Monday.

I'm so glad Rituxan is working for you. It's what the literature says is most effective... Sorry you had to go through all that to get there! I'm hoping and praying you do really well from here on out! :)

Koev,
You can go on my MuSK Antibodie facebook page and gather information for your doctor. They all DO NOT have information on the MuSK Antibodie...

Thanks Sandra!

Very happy to hear the good results from Rituxan. My insurance company at the time [Coventry] denied at MuSK antibodies test because they claimed it was experimental. Of course, the reason is always $, and after a doctor to doctor conference, they still denied it.

sandra - I was tested for MUSK along with ACHR antibodies and CPK (for the myositis family, i guess?) 2 weeks ago, haven't received the results yet.

was the first line of investigation (other than clinical exam) by my first neuro, at the recommendation of the myasthenia specialist (who I now see). will let you know how it turns out and what treatments they recommend based on the results. glad that the rituxan is working for you!!

i should add that i think part of the luck getting tests approved on my part is due to my husband working for the university where i see my specialist (he's not in medicine, but we still get insurance that has an additional lower tier of costs for using their medical center). i know when i talked to the schedulers for my chest CT scan last week, they first said i would have to get pre-approval for it from the insurance company; then when i said my husband worked for their university and had their insurance, she said that they would pay for it and i wouldn't need pre-approval. maybe a similar thing for lab tests?

PastorSteve - I just got my insurance EOB statement for the ACHR & MUSK antibodies; one was listed as "pending/not payable" so I'm guessing that was the MUSK. But neither was more than $100, and that was before they dropped it down using the insurance-negotiated rate. I know that can still be a lot, especially with other medical costs, but I was surprised to see it was not exorbitant. Could be worth looking into again, if you think it could hold some answers for you. Perhaps they would order it if you agreed to pay for it?

(The costs seem surprising to me, given these are more complicated than some tests, and I've seen other posts/sites say the MUSK test is ~$2500. So maybe I'm missing something?)

Hello, the lab that does the MuSK Antibodie testing is called Athena Diagnostics located in Wooster, Mass. They have the patent on the blood test. Athena is a very small lab, and was recently purchased from Quest Diagnostics. The blood test should be readly available for anyone to get it! Dr. Angela Vincent in the UK is the one who found the MuSK Antibodie and is still alive!!!!!

Thanks for bringing this up I was told by my Doctor about a week ago this could be my problem. She is trying to get me in the local University for testing she told me my insurance wouldn't pay for it and they could have funding and the guy is a friend of hers. Well very happy the medicine is working for you.

I was tested for the AChR one and that is what came back and my neurologist said I had MG. On my follow up visit they drew blood for the MuSK test and I have yet to find out the results. I am self pay and each test was $800.

Gee Shaggadoo, that wasn't even necessary to have paid for that test. Being that we are MG patients, we have the MuSK Antibodie listed right on our blood work. Every patient should have this test done, there would probably be more!

I just had a blood work-up and was told my Musk test came back positive. The doctor want me to come in for treatment at UIC where I am in a research. I am not sure which treatment it would be. Do you know the side effects for Rituxan? I was suppose to start IVIG before I received the call about the Musk test. Maybe it will be IVIG treatment. God bless you. Cabbage7