Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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guitarman89 02/02/2016

After being diagnosed about one year ago, I finally got a hold of the ACR report. It says the value is 13.25 Critical.
This does not seem to be an indication of how much the disease has affected me as pretty much the only symptom I experience is slurred speech after talking too much or chewing for a long time. If it stays like this I will be very happy. I do not take the Mestinon that was prescribed because the side effects were unbearable for me.

TerryinPA 02/02/2016

the number really doesn't show severity of MG, it just shows if you have it or not.

Positive: 0.5 nmol/L or greater means you have tested positive

Rhanson 02/03/2016

I also started ACHR positive. As treatment improved my symptoms, I asked my neuro to retest me to see if I was doing better.

She said that level does not correspond to symptoms, and that even folks in remission (like me) may still test positive. The tests are valuable to diagnose if you have it or not but not much more according to her.

"So," I asked, "how do you know how my MG is doing?"
"I ask you," she said. And that is how we proceeded.

Good Luck

cgreens 02/04/2016

Pay close attention to your symptoms. If you see a gradual increase, do not hesitate to start treatment. This can sneak up on you.

Beat wishes for peace

TJ from CA

guitarman89 02/05/2016

Thanks all for your replies.

photobug60 04/18/2016

The AchR titor count (the number) does not necessarily reflect the severity of your disease. The real factor (that cannot be measured) is the degree of binding effectiveness (affinity), that is, how efficiently the antibody binds to the Ach receptor. However, once you have established a baseline titor count at diagnosis, future blood tests can show to some degree how effective an immunosuppressant medication has been. In my case at diagnosis, with exacerbated bulbar symptoms, I had a titor count of 27, very high. I was a mess. After four years of prednisone therapy my latest titor count was 14. What's the value of this? Not much, really, except that knowing that the count has gone down shows me that the prednisone has worked to control the actual disease and not just the symptoms.

nnyguy1960 04/18/2016

My result was 5.66, and the doctor told me the number does not signify severity.

I use an iOS app called myMG to track my symptoms. I take two surveys every week or so to track my activities of daily living (ADL) and my quality of life (QOL). If you see a major swing in the scores, it is an indicator that things are getting better or worse. The app is from MGA.

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