So, I am still waiting on my Musk antibody tests and starting to get nervous as to what they will do if it is negative. Annie mentioned that they are still discovering more MG antibodies, so I did a little research and this is what I found. Researchers have found three types of striational antibodies: antibodies to titin, ryanodine receptor (RyR), and Kv1.4 (Voltage-gated K channel (VGKC)) as well as Anti-striated muscle antibody (anti-SM Ab) and low-density lipoprotein receptor-related protein 4 (LRP4) associated with MG. Has antibody ever had blood tests or positive results to these antibodies? Does anyone know of any more antibodies associated with MG?

thanks
kathie

Yes I'm positive for Anti-striated muscle antibody and 3 others.
Mike

Pingpongman, What other antibodies came back positive? How long and how many doctors did you have to go through before they tested for these other antibodies? Did they ever question the MG diagnosis once the Anti-striated muscle antibody came back positive?

Thanks for sharing your results
kathie

I went through 3 or 4 neuros before I found the 2 I currently see. One is local who I see every 3 months, the other is 45 minutes away and see every 6 months. The one I see every 6 months is the "expert". He was on the team that discovered some of the first antibodies. The 2 doctors confer on my case and work together very well. The "expert" does the full MG panel each time I visit.

My blood work has gone like this. First test negative, 2nd positive for binding,
3rd positive for binding, 4th positive for, Binding, Modulating, Anti-striated muscle, can't remember the 4th. I have a panel that was just done but haven't gotten the results. My Dr was in Chicago for a conference. I'm going to try to get them today. He did another panel my last visit because I was doing so well. He was curious as to what my results would show. He said my case was the most complicated he had seen.

They haven't changed my meds in 6 months because I am doing pretty good. I currently take Mestinon, Prednisone and Cellcept. We stopped my IVIG.
Mike

My antibodies tested positive jan 17, 2012, since I had my Thymectomy in May my antibodies are now testing negative that was in September!

Is that normal?

pingpongman, Thanks for the info and I am glad you are doing so well. I hope I have as good an experience with my current doctor (optic-neuro). He is suppose to be an expert also and is an hour drive away. I will keep you posted.

If anyone else finds any more link to MG antibodies, please share them.

thanks everyone,
kathie

Well, I waited 10 days and then called the lab about my Musk test. They said it would be another 2 weeks. I received a call from the neuro optomologist, my SFEMG is scheduled for June 2013. That is right, there is a 7 month waiting list for the test. Did you all have to wait that long? I hope the antibidies come back positive or I do not think they will give me any meds until they have a positive result.

kathie

Got some of my bloodwork via phone. Nurse is mailing the papers to me and should have them by friday. Anyway when the blood work was taken I was feeling better than I had in a year which is the reason the Dr wanted extensive bloodwork taken to see what it showed. Well anyway all 4 of my positive antibodies had actually increased. My wife is researching now to see if it means anything.
Mike

Kathie, Well, that really stinks having to wait so long. If it ends up that the MuSK isn't positive, do not despair! That doesn't mean you don't have MG.

A lot of the "new" MG antibodies don't have a test for them yet. And you might end up having a positive antibody down the road. They do tend to wax and wane.

Mike, If I were you, I'd have my primary doc check for the possibility of a tumor. It doesn't mean that's what is causing your antibodies to increase though. And, as you know, an increase doesn't necessarily mean a worse MG clinical picture.

Mike, let me ask, do you get any vaccines on a regular basis? The Squalene in vaccines can supercharge ANY immune response. I can't remember, have you seen an immunologist? I hope they can figure out what's going on.

Annie

Annie I haven't had a shot in years. I will discuss with my main Dr (wife) about seeing an immunologist. I see too many doctors now but guess another won't hurt.
Mike