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Old 11-27-2014, 07:36 PM #1
jvaagen jvaagen is offline
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Default new test results

Ok so last week had a blood test for myashenia gravis panel and got the results.

Component -Striated muscle AB
Standard range = negative
Your value= negative

Component Acetylcholine receptor binding AB.ser.qn
Your value=79.20

Does anybody know what this means. I'm guessing it means negative for myashenia, but have had diagnosed MG for 9 years and still have the muscle fatigue and weakness.
After moving to northern California 5 years ago I haven't seen a neuro yet untill October of tthis year. Due to the holiday haven't seen him for result explanation. If anyone could suggest other tests to get better accurate result. Thanks for all the help
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Old 12-01-2014, 02:53 PM #2
suev suev is offline
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HI jvaagen....welcome!

May I ask how was your MG diagnosed 9 years ago? Have you or are you on meds for MG?

Poke around this forum and you will find many folks who are neg on most all of the blood antibody tests (me) and some of the electorde tests (I was borderline). But we still have MG!

My neuro did all the tests and dx'd me on clinical exam and my improved muscle strength after a monitored dose of Mestinon. That was almost 5 years ago and I have been doing ok with only Mestion (I'm very lucky)

See what your new neuro says and how he/she wants to proceed - but don't give in to the 'your tests are negative so I really don't think there's anything to worry about' brush off. Document your weakness - what - where- when - how long and use that info when questioning neuro as to what the cause could be. Pictures are good if you have what I call the 'melting face'. You have to be a bit diplomatic - but persistent with neuros. (Many have few interpersonal skills and even less patience.)

Good Luck and pls update us on outcome.
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Old 12-01-2014, 04:16 PM #3
AnnieB3 AnnieB3 is offline
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Hi, jvaagen. Welcome to the forum.

Most, if not all, acetylcholine binding antibody tests in the US have the range of < or = 0.02 as the normal range.

http://www.mayomedicallaboratories.c...erpretive/8338

Your number is well above that, meaning that it is highly positive.

Are you currently on any drugs for MG? You were diagnosed 9 years ago, correct? Did they put you on drugs at that time? Did they ever take a look at your thymus gland?

I don't think you need another test to have a more accurate result! Was the acetylcholine modulating antibody test done as well?

I hope you will see the neurologist very soon!

Annie
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Old 12-01-2014, 05:04 PM #4
jvaagen jvaagen is offline
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So the story goes like this. 9 years ago arrived home from work and could feel a little weakness in the legs and arms. Exited my truck to bring in the trash cans from alley (lived in joliet Illinois at the time) and pick up cans walk 5 feet and immediately feel to the ground.I waited about 30 seconds and got back up and tried to go up a 2 inch step with right foot, no good used left foot, was able to proceed. I then made it to my back door and tried to go up a 1 inch step and again immediately feel down. I called for my wife after calling her 2 times she came out. I told her I couldn't get inside. She asked me what do I want her to do. I said to atleast roll me into back porch and call 911. Ambulance arrives and they put me in back. Then all of a sudden it was hard for me to breathe. I started to cry cause my son was only 3 months old. They pushed up the back of the gaurney and that help. Arrived at hospital and did several test. Blood was one ekg.eeg and one they stuck pins up and down the muscles in both legs and arms (that one hurt the worsed. After that they couldn't figure out what was wrong. They let me out on Christmas eve. I then saw my Primary Doctor he refered me to a local Neuro which couldn't find anything then he refered me to a myasthinia gravis specialist at loyola. He did diffrent test that gave me the diagnosis 9 years ago was see him intil 2009 when I moved to northern California and each primary doctor just refilled the mestinon with no other meds.
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