Have I been tested good enough for Myasthenia gravis?

ChookityPop

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My neurologist told me she had tested for every autoantibodies there is basically. I have attached a picture of what she tested me for. She communicates extremely poorly so we ended up in a pretty heated discussion at my first appointment. She has a very bad reputation and is apparently known for being an agressive and shitty Dr.
So she essentially lied to me when she said she had tested "the whole battery", right?


She has not tested these myasthenia gravis antibodies as far as I can see:

Myasthenia gravis >90% have acetylcholine receptor antibodies:
Beta-1 adrenergic receptor
Beta-2 adrenergic receptor
Muscarinic cholinergic (M1) receptor
Muscarinic cholinergic (M2) receptor
Muscarinic cholinergic (M3) receptor
Muscarinic cholinergic (M4) receptor

Or Am I wrong? Its confusing when all it says is anti acetylcholinereseptor antibodies and not Muscarinic m1 etc.
 

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kangaSue

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Your Neurologist looks to be making a reasonable effort and has run 2 panels in your attachment. Top one is for Myositis and the bottom one includes the standard anti acetylcholine receptor antibody test for MG. I thought it was common practice with MG to also test for anti MuSK (muscle-specific kinase) antibodies and anti-striated muscle antibodies as well though.
https://labtestsonline.org/conditions/myasthenia-gravis

It doesn't rule out LEMS (Lambert Eaton's Myasthenic Gravis) either which can be misdiagnosed as ME/CFS and is more neuropathic (as opposed to muscular - as in myositis) and can largely involve P/Q type voltage-gated calcium channel antibody, or N type voltage-gated calcium channel antibody in some cases.

I think alpha and beta adrenergic receptor and most muscarinic cholinergic receptor antibody tests are still considered 'research' tests and don't generally get done as a standard test (except by CellTrend).
 
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My neurologist told me she had tested for every autoantibodies there is basically. I have attached a picture of what she tested me for. She communicates extremely poorly so we ended up in a pretty heated discussion at my first appointment.
So she lied to me when she said she had tested "the whole battery", right?


She has not tested these myasthebia gravis antibodies as far as I can see:

Myasthenia gravis >90% have acetylcholine receptor antibodies:
Beta-1 adrenergic receptor
Beta-2 adrenergic receptor
Muscarinic cholinergic (M1) receptor
Muscarinic cholinergic (M2) receptor
Muscarinic cholinergic (M3) receptor
Muscarinic cholinergic (M4) receptor

Or Am I wrong? Its confusing when all it says is anti acetylcholinereseptor antibodies and nut Muscarinic m1 etc.
No he has not. To be sure you have to do a repetitive nerve stimulation
 

ChookityPop

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Your Neurologist looks to be making a reasonable effort and has run 2 panels in your attachment. Top one is for Myositis and the bottom one includes the standard anti acetylcholine receptor antibody test for MG. I thought it was common practice with MG to also test for anti MuSK (muscle-specific kinase) antibodies and anti-striated muscle antibodies as well though.
https://labtestsonline.org/conditions/myasthenia-gravis

It doesn't rule out LEMS (Lambert Eaton's Myasthenic Gravis) either which can be misdiagnosed as ME/CFS and is more neuropathic (as opposed to muscular - as in myositis) and can largely involve P/Q type voltage-gated calcium channel antibody, or N type voltage-gated calcium channel antibody in some cases.

I think alpha and beta adrenergic receptor and most muscarinic cholinergic receptor antibody tests are still considered 'research' tests and don't generally get done as a standard test (except by CellTrend).
Thanks for the feedback! I will try to get the remaining antibodies tested. I wonder if its possible to not test positive for acetylcholine antibodies but test positive for anti MuSK (muscle-specific kinase) antibodies and anti-striated muscle antibodies.

Ive written down LEMS and will get tested for this somehow as well. Thank you!
 

kangaSue

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Thanks for the feedback! I will try to get the remaining antibodies tested. I wonder if its possible to not test positive for acetylcholine antibodies but test positive for anti MuSK (muscle-specific kinase) antibodies and anti-striated muscle antibodies.
Nothing's ever easy in this chronic illness caper! You can have MG and be seronegative (patients without anti-AChR antibodies), or just test positive to MuSK antibodies, or be double seronegative (patients without anti-AChR or MuSK antibodies), but test positive to some other antibodies.
https://www.frontiersin.org/articles/10.3389/fneur.2020.596621/full
https://raremark.com/categories/con...hat-is-seronegative-myasthenia-gravis-mg--747

You may respond to a trial of Mestinon (pyridostigmine) regardless though so can be one way to find out if that's the case. There's been a few cases where some folks with ME/CFS have found this to be particularly effective for their overall symptoms anyway.
https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/
 

ChookityPop

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Nothing's ever easy in this chronic illness caper! You can have MG and be seronegative (patients without anti-AChR antibodies), or just test positive to MuSK antibodies, or be double seronegative (patients without anti-AChR or MuSK antibodies), but test positive to some other antibodies.
https://www.frontiersin.org/articles/10.3389/fneur.2020.596621/full
https://raremark.com/categories/con...hat-is-seronegative-myasthenia-gravis-mg--747

You may respond to a trial of Mestinon (pyridostigmine) regardless though so can be one way to find out if that's the case. There's been a few cases where some folks with ME/CFS have found this to be particularly effective for their overall symptoms anyway.
https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/
Thanks! I will have another go with Mestinon slowly upping the dose and see what happens. And also get a repetitive nerve stimulation test done to be sure.

I don't understand why the neurologists don't tell me these things are worth excluding. They told me there was no reason to believe I have SFN since my EMG and nerve conduction study came back normal. So I had to argue to get her to refer me to a sweat test which was rejected. I sent in a lengthy complaint and got granted a skin biopsy which turns out to be positive on my high thighs. These people are seriously talentless
 
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