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...
I've had MG symptoms for a very long time (Breathing issues, muscle weakness, slurred speech, swallowing problems, etc.) and an MG crisis put me in ICU for a week about 5 weeks ago. Since then, neither my regular neuro, or the neuro specialist she sent me to are willing to give me anything other than 60 mg of prednisone a day to control the symptoms.This is because I'm seronegative for both AChR and MUSK as well as for both SFEMG and nerve conduction study.
I was originally diagnosed with MG as a diagnosis of exclusion, due to clinical evaluation, muscle biopsy results, pulmonary function tests, and the fact that I responded to Mestinon (before I developed toxic symptoms so I can't take it now). But now, the docs seem more determined to "undiagnose" MG than to find any alternate diagnosis, or come up with some treatment beyond steroids.
After much hullabaloo, and input from my pulmonologist (the only one not trying to disprove the MG diagnosis), I have been scheduled for an EMG/NCS of the diaphragm.
So forgive me if this was TMI, but as a result of all this, I have two questions......
1. Has anyone else been consistently seronegative on blood tests, as well as negative on muscle and nerve testing?
2. Has anyone had a nerve conduction study done of the diaphragm? If so, what does the test entail? It sounds uncomfortable, but I'm having trouble finding specifics when I search online.
Thanks as always for the phenomenal support you all continue to give!
Tamara
I was originally diagnosed with MG as a diagnosis of exclusion, due to clinical evaluation, muscle biopsy results, pulmonary function tests, and the fact that I responded to Mestinon (before I developed toxic symptoms so I can't take it now). But now, the docs seem more determined to "undiagnose" MG than to find any alternate diagnosis, or come up with some treatment beyond steroids.
After much hullabaloo, and input from my pulmonologist (the only one not trying to disprove the MG diagnosis), I have been scheduled for an EMG/NCS of the diaphragm.
So forgive me if this was TMI, but as a result of all this, I have two questions......
1. Has anyone else been consistently seronegative on blood tests, as well as negative on muscle and nerve testing?
2. Has anyone had a nerve conduction study done of the diaphragm? If so, what does the test entail? It sounds uncomfortable, but I'm having trouble finding specifics when I search online.
Thanks as always for the phenomenal support you all continue to give!
Tamara
I'm seronegative for everything too! EMG, SFEMG, AChR, MuSK and LEMS antibodies as well. I had a "Lazarus effect" with Mestinon which is starting to work a little less well one year in.
I see my MG neuro in Feb for "follow up" and I'm worried that I'll be dismissed as not having MG. But this is the doc that told me there are probably 100 antibodies that cause MG and we can only test for a few of them.
I always like to think of how folk like us were treated before all the new technologies were invented. When no one could test our blood or poke our electrodes but we would show up with swallowing problems and fatigable muscle weakness, a doctor would have said "you have myasthenia gravis!". Now with so many tests available doctors turn away those of us without positive results on the most common antibodies or tests.
But so many of us are zebras, not horses! I had a 5 year journey to rule out MG and it wasn't until I got weaker that the diagnosis came back on the table. You've had a crisis so obviously have some kind of disease that needs treating.
So hang in there and keep believing that you deserve the best care possible. I haven't had a diaphragm test so can't help there but am sending you hugs of support to help you in the diagnostic hoops you must jump through!
Flutebell
Good luck to you Tamara
I was at my primary neurologist's office today. She continues to feel that I do not have MG, but perhaps one of any number of myopathies, some of which have no real treatment (a cheery thought isn't it?). She feels that if it was MG, I'd be seeing a better result from the prednisone I'm taking now, as well as from the one set of IVIG treatments I had while in the hospital. I asked if we could try some other type of treatment, plasmapheresis, rituxin, etc. but the answer was no, because those drugs are too high powered to give to a patient who has no evidence of MG via antibody or nerve/muscle tests. Sigh......as if 60 mg of prednisone a day, which they're giving me now, is not high powered??? That's on top of all the other meds that have been prescribed to manage accompanying symptoms.
It's my understanding that IVIG needs to be ongoing to be effective, but my neuro disputed that, so for now, I'm stuck going to to specialist, for more testing, and for more head scratching on the part of all concerned.
So, another day, another doctor........thank goodness for the doses of sanity I find here from you all!
Hugs
That's just what I said to the neuro, but she disputed that. I think the problem is that they don't see enough MG patients to have a good understanding of the treatment processes. And, unfortunately, the specialist I've been sent to seems to specialize in ALS and muscular dystrophy, not MG. So it's been a fight all the way around to get a diagnosis from someone who truly understands us"snowflakes."
The regular neuro suggested I go to Mayo, but I wonder whether that wouldn't just be more of the same runaround. I guess I'll see if the diaphragm nerve conduction study helps determine anything....if not, mayo or some other place might be my only recourse.
So tired of doctore, and testing.....this journey started for me 10 years ago! And I'm still fighting for a diagnosis??? Ugh!
Hugs and happy thanksgiving:)