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...
Want to read the doctor's update on MG?
This is probably the minimum you should insist your family doctor read about MG before you allow them to treat you. Remember, the average doctor knows very little about MG and unless they choose to educate themselves having your treatment in their hands can be difficult! My family doctor deferred everything related to MG to my neuro -- and in an integrated practice (Mayo) the shared responsibility worked great for me.as all of my doctors conferred with each other on my treatment.
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/cei.12217
At the beginning of the article we read Myasthenia Gravis should be classified according to the
antibody specificity
[acetylcholine, muscle-specific receptor tyrosine kinase (MuSK), low-density lipoprotein receptor-related protein 4 (LRP4), or
seronegative]
thymus histology (thymitis, thymoma, atrophy),
age at onset (in children; aged less than or more than 50 years)
and type of course (ocular or generalized).
So my diagnosis in 2012 would have been
Acetylcholine (ACHR +)
Normal thymus
Age 65 onset
Ocular proceeding to General
with the comments: Ocular proceeding to general controlled with 40-60 mg prednisone. Currently in drug free remission for 18 months.
Note: This is what is put out for doctors to come up to speed on MG in 2014. You can decide how well it does that.
Good Luck!
This is probably the minimum you should insist your family doctor read about MG before you allow them to treat you. Remember, the average doctor knows very little about MG and unless they choose to educate themselves having your treatment in their hands can be difficult! My family doctor deferred everything related to MG to my neuro -- and in an integrated practice (Mayo) the shared responsibility worked great for me.as all of my doctors conferred with each other on my treatment.
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/cei.12217
At the beginning of the article we read Myasthenia Gravis should be classified according to the
antibody specificity
[acetylcholine, muscle-specific receptor tyrosine kinase (MuSK), low-density lipoprotein receptor-related protein 4 (LRP4), or
seronegative]
thymus histology (thymitis, thymoma, atrophy),
age at onset (in children; aged less than or more than 50 years)
and type of course (ocular or generalized).
So my diagnosis in 2012 would have been
Acetylcholine (ACHR +)
Normal thymus
Age 65 onset
Ocular proceeding to General
with the comments: Ocular proceeding to general controlled with 40-60 mg prednisone. Currently in drug free remission for 18 months.
Note: This is what is put out for doctors to come up to speed on MG in 2014. You can decide how well it does that.
Good Luck!
I don't know what caused the remission, although my speculation is that I my MG was related to very low testosterone levels that were brought back to low normal at the same time I began my second attempt to taper prednisone and got off of it. Hypogonadism can mess up lots of biological systems.
However, this is not evidence, but rather speculation. Anyway, I stayed on T replacement and now am 19 months in remission. Something like 15% of MG people go into remission without any particular reason, so maybe that is the case. I have not tried stopping the T replacement to see if MG returns as it is treatment for my hypogonadism (probably of onset a few years ago).
Good Luck