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Second Abnormal Striated Muscle AB Test

AngelM

Senior Member
Messages
150
Location
Oklahoma City
I am not certain this is the right place to ask this question. And I don’t want to bore everyone by repeating the same story I have told on the forum before , so I will keep it short.

A year ago, I had a abnormal striated muscle AB test. Since my daughter has Myasthenia Gravis, the result was unsettling. I traveled 700 miles in order to see a neurologist listed on the MG Foundation’s neurologist list. She looked at all the test results, including those she had requested that my PCP run before my appointment. She looked at the MRI, checked my muscle strength, had me walk a straight line, and then abruptly dismissed me—saying I was “totally healthy.” I just learned the results of a second striated muscle AB test done two weeks ago, and it is more elevated this time than it was a year ago. My symptom’s are much worse than last year, my vision blurry off and on, and I continue to be wobbly when I walk. The note the doctor included with the test results was “See a neurologist.”

This is all so very upsetting. A year ago I went through the expensive process of seeing a neurologist in another state listed on the MG Foundation website—because there is no MG specialist here.

I don’t know what to do at this point. I don’t want to repeat going down the same very expensive rabbit hole as last year. I don’t understand the test, what it means, what illness, if any, it might indicate. I really need advice from anyone who has had a similar experience. MG is not hereditary—at least not to my knowledge—so I don’t think that the fact that my daughter has MG is relevant. I don’t know what to believe. I am totally lost.
 

Judee

Psalm 46:1-3
Messages
4,405
Location
Great Lakes
My thoughts are that you obviously cannot ignore this. I was thinking that if you could find a neurologist that specializes in MG in your area that would be best so you don't have to repeat that 700 mile nightmare.

I found this guy but his reviews are mixed with most of them positive: https://doctors.oumedicine.com/joon-shik-moon-oklahoma-city-neurology but if you look the middle of the page under Areas of Expertise it does list MG.

Also this website doesn't come up on search very easily but I love it because you can put in a condition and it will find doctors in your area who treat that condition more than others do based on insurance codes collected from the insurance companies. Here is what came up for Oklahoma City and MG: https://amino.com/myasthenia-gravis-mg/doctors/oklahoma-city-metro-area/

For instance when I click on the top doctor, Dr Beson it shows: Dr. Beson is a neurologist in the Oklahoma City Metro area. He is affiliated with Integris Baptist Medical Center and 4 more hospitals. He was a top doctor for myasthenia gravis (MG) in 2014–2018. And below that it says: Dr. Beson saw more myasthenia gravis (MG) patients than 85% of similar doctors nationwide in 2014–2018. (Wonder if that includes all M.D.s or just his specialty.?)

Of course, none of this information guarantees that any of these doctors are great, but at least maybe you won't have to go way out of your way to possibly find someone.

Hope something here can help.
 
Last edited:

AngelM

Senior Member
Messages
150
Location
Oklahoma City
@Judee, thank you for all that wonderful information. I will definitely check it out. Right now, I am in a daze. My PCP made a referral to a neurologist who, he said, specializes in “movement.” I don’t know what is meant by “movement.” I’m trying to schedule an EMG. But the referral to the neurologist and for the EMG were made before the results of the MG panel were back from the lab. This is all very confusing.