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okay, i am still doing all the research I can on mg and a few other things, because I am thinking I am going to have to advocate for myself untill I find a doc who knows what he is doing.

So I found this last night, I will try to explain in right. Okay the test a certain something in the muscles that should be changed in a patient with MG. However if someone, per say, like me. started with symptoms years ago and has been very gradual until I was hit with shingles virus. If its been gradual over the years the test can appear normal.

I know I didn't give you all the technical terms, but I just wanted to share that with you all, because I thought it was very interesting.
Posted on 05/25/12, 09:10 am
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Reply #1 - 05/25/12  9:39am
" I too am doing the research, because I feel like I have the symptoms of this, but my tests are all coming back good. Here is what I have come up with:

1) There is the Acetylcholine blood test. Getting a positive number on this test indicates mg, but getting a negative does not rule it out. There is a percentage of mg patients that don't register a number on this test.
2) There is a muSK blood test (or one in the works). There is a percentage of mg patients who will get a positive on this test when they are seronegative on the acetylcholine test.

I don't know much about the muscle testing as I haven't had it done yet and have really been researching what I have already been through. I get why people call it the Snowflake disease. Not only does it affect everyone differently, but with each person showing different symptoms, there is a different biological component to it all that makes it hard to find a yes or no answer to diagnosing it.

Very frustrating!
N "
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Reply #2 - 05/25/12  4:05pm
" Hi Snuggs,
I would like to look at that article if you have the information still. I think you may be talking about EMGs. All of us who have negative tests, but positive symptoms (that don't always show up when we are in the doctor's office), need all the ammunition we can get.

There is a test for MuSK, but it is only done by one lab in this country (Athena, California) There are other antibodies and antibody tests that are not available commercially. The statistics go something like this: 80% AchR +, of the remaining 20% the % positive for MuSK depends on genetic make up of the group, the remaining % are supposed to almost all be positive on SFEMG which is highly specific for MG, meaning very few false positives, but there are false negatives. There is another antibody test at research level that is picking up another antibody LPR4, I think, but even it is not positive in all the remaining people who were negative for AchR and MuSK and carry the clinical diagnosis of MG. Given the experience of this group and the difficulty of being diagnosed without positive blood tests there may be many more people who have MG who are just not getting or who have given up trying to get diagnosed.

You can learn a lot by looking up the links in the Links Group and listening to the podcasts from the yearly meetings of the MGFA. There should be papers available from the international conference just held, but it may be some time before they are online. Those conferences are held every five years. b. "

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