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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Just chiming in here quickly and want to say that as someone who does have MG (Achr positive ABs), the thing that you really want to exclude LEMS is a VERY seasoned, experienced EMG Neurologist. The one i got was a very experienced EMG specialist in a department that specifically does these to diagnose neuromuscular disorders, and she said that with LEMS you will basically (almost) ALWAYS have a serious decrement right away. If you don't have that and you don't have the VGCC ABs then Lems is excluded with pretty big certainty.

MG however, is tricky to distinguish from EMGs alone, for instance i had a completely clean EMG even though i have it. So if your EMG is clean and you don't show ABs, you really need to go with Mestinon to see how you're doing. Though as mentioned already, i feel like Mestinon is also helping my general fatigue a LOT which at this point, i am no longer convinced it stems from the MG alone, but Mestinon is known to help with general dysautonomia symptoms as well so it's all a bit conflated.
 

ChookityPop

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Just chiming in here quickly and want to say that as someone who does have MG (Achr positive ABs), the thing that you really want to exclude LEMS is a VERY seasoned, experienced EMG Neurologist. The one i got was a very experienced EMG specialist in a department that specifically does these to diagnose neuromuscular disorders, and she said that with LEMS you will basically (almost) ALWAYS have a serious decrement right away. If you don't have that and you don't have the VGCC ABs then Lems is excluded with pretty big certainty.

MG however, is tricky to distinguish from EMGs alone, for instance i had a completely clean EMG even though i have it. So if your EMG is clean and you don't show ABs, you really need to go with Mestinon to see how you're doing. Though as mentioned already, i feel like Mestinon is also helping my general fatigue a LOT which at this point, i am no longer convinced it stems from the MG alone, but Mestinon is known to help with general dysautonomia symptoms as well so it's all a bit conflated.
Great info, thanks for chiming in. I learned that some MG patients that are seronegative and are negative on EMG and nerve conduction study test positive on single fiber EMG and/or repetitive nerve stimulation test. So in my case they cant rule out MG 100% before these last two tests are done. I will make sure they do these last two tests.

Is there a minimum dosage of mestinon one should take before concluding If it works? 60mg 3x a day?
 

Gingergrrl

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Just chiming in here quickly and want to say that as someone who does have MG (Achr positive ABs), the thing that you really want to exclude LEMS is a VERY seasoned, experienced EMG Neurologist.
@Ethereal55 Your post was excellent and was really helpful to me (even though I already have a LEMS diagnosis and am in remission). My main doctor is outstanding and saved my life and got me the right treatments (several years ago) but in my case, I was never able to find a neuromuscular specialist (or any neurologist) who was willing or able to take my case.

At this point it does not matter for me, but looking back on it, you are 100% right that with LEMS you need a very experienced EMG neurologist. I did an EMG w/a neurologist in 2016 but it was not the single fiber EMG which is the gold standard for LEMS. That Neuro told me that my results were "normal" but when I requested my medical records, he had written that my left phrenic nerve to my diaphragm was only functioning at around 55% (which is not normal)!

I believe in retrospect that Neuro was afraid to work with me b/c I had a history of anaphylaxis from MCAS (as a separate issue). Luckily my other doctors were not afraid and I was able to get the treatments that I needed without ever having a Neuro onboard. But having a Neuro on board would have made it easier to get insurance approval for my treatments and led to additional testing (back at that time).

The one i got was a very experienced EMG specialist in a department that specifically does these to diagnose neuromuscular disorders
Are you in the US or another country?

and she said that with LEMS you will basically (almost) ALWAYS have a serious decrement right away. If you don't have that and you don't have the VGCC ABs then Lems is excluded with pretty big certainty.
This is exactly what happened in my case (I had a very rapid, progressive worsening of muscle weakness that was affecting my breathing and I tested positive for the VGCC Abs N-type). But I was negative for the myasthenia gravis & MuSK Abs.
 
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@Ethereal55 Your post was excellent and was really helpful to me (even though I already have a LEMS diagnosis and am in remission). My main doctor is outstanding and saved my life and got me the right treatments (several years ago) but in my case, I was never able to find a neuromuscular specialist (or any neurologist) who was willing or able to take my case.

At this point it does not matter for me, but looking back on it, you are 100% right that with LEMS you need a very experienced EMG neurologist. I did an EMG w/a neurologist in 2016 but it was not the single fiber EMG which is the gold standard for LEMS. That Neuro told me that my results were "normal" but when I requested my medical records, he had written that my left phrenic nerve to my diaphragm was only functioning at around 55% (which is not normal)!

I believe in retrospect that Neuro was afraid to work with me b/c I had a history of anaphylaxis from MCAS (as a separate issue). Luckily my other doctors were not afraid and I was able to get the treatments that I needed without ever having a Neuro onboard. But having a Neuro on board would have made it easier to get insurance approval for my treatments and led to additional testing (back at that time).



Are you in the US or another country?



This is exactly what happened in my case (I had a very rapid, progressive worsening of muscle weakness that was affecting my breathing and I tested positive for the VGCC Abs N-type). But I was negative for the myasthenia gravis & MuSK Abs.

I am located in Europe...and had to travel to a specialized MG subunit in a university hospital in another country to even get taken seriously.

What complicated my diagnosis even further was the fact that i was developing rather strong dry mouth issues at the SAME time that my muscle weakness first started to appear. So naturally i was looking at LEMS as a possible or even probably diagnosis. Achr ABs also rarely DO show up in LEMS when VGCCs do not necessarily show up right away but maybe later on in the disease. So yeah, in the end i guess there is still a tiny chance that i DO have LEMS and not MG but for now i am going with MG, especially since that Neuro was 100% convinced it was not LEMS, and the probability is a lot higher for MG (Lems is a lot rarer than MG) and Mestinon works so.... i have since developed other autoimmune issues with no clear diagnosis, so i attribute the dry mouth and eyes to that instead since they often occur in general autoimmunity anyways.

Do you get dry mouth at all with your Lems then?
 
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Great info, thanks for chiming in. I learned that some MG patients that are seronegative and are negative on EMG and nerve conduction study test positive on single fiber EMG and/or repetitive nerve stimulation test. So in my case they cant rule out MG 100% before these last two tests are done. I will make sure they do these last two tests.

Is there a minimum dosage of mestinon one should take before concluding If it works? 60mg 3x a day?
Personally, i started out with rather low dosages to make sure i tolerated it because i am paranoid like that.

I did 30 mg once a day, for like 4 or 5 days, then after it went ok but didn't notice much difference i went up to 30 mg X 2 a day for 5 days, etc. until i ended up a few months later with 3 X 60 mg per day, which is what i take now. It really makes a difference i feel, and my crushing fatigue i had last year before diagnosis has been reduced by...maybe 40% at least, allowing me to function at least in a way that i can do parts of my household and do shopping etc. and go for some light walks. I am very careful to not overdo it though because when i do that, things take a turn down south rather quickly, which i attribute to MG and/or "CFS" / EBV etc.
 

ChookityPop

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I am located in Europe...and had to travel to a specialized MG subunit in a university hospital in another country to even get taken seriously.

What complicated my diagnosis even further was the fact that i was developing rather strong dry mouth issues at the SAME time that my muscle weakness first started to appear. So naturally i was looking at LEMS as a possible or even probably diagnosis. Achr ABs also rarely DO show up in LEMS when VGCCs do not necessarily show up right away but maybe later on in the disease. So yeah, in the end i guess there is still a tiny chance that i DO have LEMS and not MG but for now i am going with MG, especially since that Neuro was 100% convinced it was not LEMS, and the probability is a lot higher for MG (Lems is a lot rarer than MG) and Mestinon works so.... i have since developed other autoimmune issues with no clear diagnosis, so i attribute the dry mouth and eyes to that instead since they often occur in general autoimmunity anyways.

Do you get dry mouth at all with your Lems then?
Which university did you go to? I might have to do the same eventually. And do the health care system in your country approve your out of country diagnosis?
 
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Which university did you go to? I might have to do the same eventually. And do the health care system in your country approve your out of country diagnosis?
Are you located in EU as well? I actually went to Bonn as they are one of the bunch of hospitals that have a dedicated MG subunit! There are others too, there is a list for them i think. Health care system does not formally acknowledge anything but so far they ARE reimbursing about 50% of what i send in, the rest is on me, which...isn't great but i am sucking it up (no choice really).
 

SWAlexander

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On Oct. 20 I went to an MG specialist in Germany/Regensburg. All tests for MG and LEMS came out inconclusive. Dr´s remarks: "further tests are required". Due to COVID, I could not get a new appointment.

On Jan 14th 22 I filed for a handicap parking sign in Germany, which is normally only given to people who have both legs amputated. For this reason, each application is rigorously screened by doctors.

This Monday, I received a call from a doctor in the health department asking me why I can´t walk more than 20 meters or walk steps. As I explained he interrupted me saying: "I read the report from Regensburg, - you don't have MG or LEMS. But, I see your MRI shows you also have Tarlov Cysts. Did your neurologist explain the symptoms? "
No, I answered, I have only a vague idea. Then he advised me to read everything in the link: https://en.wikipedia.org/wiki/Tarlov_cyst.

I was shocked that my neurologist in the USA, after an MRI in 2009, never informed me what symptoms Tarlov Cysts include. Now, the many symptoms I have beginning to make sense.
 
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Gingergrrl

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I am located in Europe...and had to travel to a specialized MG subunit in a university hospital in another country to even get taken seriously.
Thank you and I did not think that you were in the US from what you described but was not certain. I am not sure that we have any treatment centers here that specialize in MG & LEMS (but there must be and I just did not find them in my search back in 2016).

What complicated my diagnosis even further was the fact that i was developing rather strong dry mouth issues at the SAME time that my muscle weakness first started to appear. So naturally i was looking at LEMS as a possible or even probably diagnosis.
Do you mean that dry mouth is associated specifically with LEMS?

Achr ABs also rarely DO show up in LEMS when VGCCs do not necessarily show up right away but maybe later on in the disease
I have heard of that and also of people being sero-negative for MG or LEMS (testing negative for the autoantibodies but still having the disease in reality). In my case, once I tested positive for the N-type CA+ Channel Ab, it never went away and stayed positive. I have no idea when I first developed the Ab b/c I had never been tested for it prior to 2016.

and Mestinon works so....
I tried Mestinon in 2015 for POTS but was not able to tolerate it, even at a tiny micro dose! This was before I had even heard the word "LEMS" (or knew that it pertained to my muscle weakness). I also had severe POTS and was trying different meds for it back in 2013 to 2015.

i have since developed other autoimmune issues with no clear diagnosis, so i attribute the dry mouth and eyes to that instead since they often occur in general autoimmunity anyways.
Do you think your dry mouth & dry eyes could be from Sjogrens Syndrome? Have you ever been tested for the Sjogrens autoantibodies? I was also curious if you test positive for anti GAD65? I consistently am also positive for GAD65.

Do you get dry mouth at all with your Lems then?
I have never had dry mouth.

On Jan 14th 22 I filed for a handicap parking sign in Germany, which is normally only given to people who have both legs amputated. For this reason, each application is rigorously screened by doctors.
Wow, I had no idea how strict it is to get a disabled parking placard in Germany! It is fairly easy to get one in the US (w/a valid doctor's note of course). I first got a disabled placard in 2014 when I started to use a wheelchair. I was not able to walk or drive back then but we used the placard for whoever was driving me and pushing my wheelchair. By mid 2018, I started to go into remission and was able to walk short distances without a wheelchair but still needed the placard. When it expired in 2020, I did not renew it and I no longer have any limitations on the amount that I can walk (as long as it is on a flat surface and I am still limited w/stairs).
 
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Thank you and I did not think that you were in the US from what you described but was not certain. I am not sure that we have any treatment centers here that specialize in MG & LEMS (but there must be and I just did not find them in my search back in 2016).


Do you mean that dry mouth is associated specifically with LEMS?


Yes, Dry mouth is very common in Lems. I have researched all the symptoms pre diagnosis because i was certain i had it. It occurs in both the autoimmune and the paraneoplastic Lems forms.

I have heard of that and also of people being sero-negative for MG or LEMS (testing negative for the autoantibodies but still having the disease in reality). In my case, once I tested positive for the N-type CA+ Channel Ab, it never went away and stayed positive. I have no idea when I first developed the Ab b/c I had never been tested for it prior to 2016.


Yes, i too would love to know just for HOW long i have actually had these ABs, especially to confirm my theory that the MG emerged right alongside the EBV reactivation, but no way to go back in time sadly :(

I tried Mestinon in 2015 for POTS but was not able to tolerate it, even at a tiny micro dose! This was before I had even heard the word "LEMS" (or knew that it pertained to my muscle weakness). I also had severe POTS and was trying different meds for it back in 2013 to 2015.


That is interesting... i have read that in people that do NOT have MG, Mestinon is often not tolerated so well, seems to be a practical example of that! Shame too because it works well against fatigue and dsyautomia symptoms because it increases blood pressure somewhat i believe, which is a mechanism to improve POTS i think. What were your symptoms for intolerance? Did you start out at like...10 mg /day? Did you take it with food? That helps a lot at first.

Do you think your dry mouth & dry eyes could be from Sjogrens Syndrome? Have you ever been tested for the Sjogrens autoantibodies? I was also curious if you test positive for anti GAD65? I consistently am also positive for GAD65.


At this point i have no clue... Sjogrens was the obvious first cause that sprang to mind as well for me, but then it also kind of occurs a lot in EDSers without Sjogrens apparently, i also tested negative for all common ABs back then, except for a positive ANA. GAD65, i don't think they've tested that one though. I need to recheck my records but if they did it was negative or else i would have known.


I have never had dry mouth.


Well count your lucky stars, because especially with dry air in winter now...it's no fun!
 

Gingergrrl

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@Ethereal55

I can't use multi-quote because your entire reply is inside of one big quote box (in post #18 of this thread) so I just copied & pasted it so that I can reply to a few things here:

You said:
Yes, Dry mouth is very common in Lems. I have researched all the symptoms pre diagnosis because i was certain i had it. It occurs in both the autoimmune and the paraneoplastic Lems forms.
That is interesting and I did not know that dry mouth is common in LEMS and I've never had that symptom. In my case, the LEMS was determined to be autoimmune and not paraneoplastic (and I did the lung cat scans for 3-years in a row). I am assuming that you have also checked to rule out cancer (or that you are in the process of doing this)?

Yes, i too would love to know just for HOW long i have actually had these ABs, especially to confirm my theory that the MG emerged right alongside the EBV reactivation, but no way to go back in time sadly :(
I also had a severe case of Mono/EBV in 2012 that re-activated in 2013 and then immediately led to me having severe POTS (but I was not tested for the autoantibodies until 2016).

That is interesting... i have read that in people that do NOT have MG, Mestinon is often not tolerated so well, seems to be a practical example of that! Shame too because it works well against fatigue and dsyautomia symptoms because it increases blood pressure somewhat i believe, which is a mechanism to improve POTS i think. What were your symptoms for intolerance? Did you start out at like...10 mg /day? Did you take it with food? That helps a lot at first.
If I remember correctly, I was given a 60 mg tablet that I cut into 1/8ths so the dose that I tried was only 7.5 mg. I was not able to tolerate it (at that time) and it gave me respiratory depression. Back then, I also got respiratory depression from Magnesium and other things that were calcium channel blockers (but I did not yet know why). My doctor had me try the Mestinon in the hope that it would raise my blood pressure (which was very low) and help w/POTS. I don't remember if I took it w/food but in my case, I don't think that would have made any difference.

At this point i have no clue... Sjogrens was the obvious first cause that sprang to mind as well for me, but then it also kind of occurs a lot in EDSers without Sjogrens apparently, i also tested negative for all common ABs back then, except for a positive ANA. GAD65, i don't think they've tested that one though. I need to recheck my records but if they did it was negative or else i would have known.
Can you still get tested for Sjogrens to rule it in or out? What was your ANA titer & pattern? It sounds like you either did not test for anti GAD65 or that you did and it was negative. I tested positive for GAD65 on the same Mayo Panel where I learned that I tested positive for the Calcium Channel Autoantibodies.