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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Seronegative MG

bear57
bear57
I was told this week they would like to send me to a local University and test me for Seronegative MG. My Neurologist told me my Insurance would not pay for the test and she wanted a second opinion and she thought it could be this type of MG and they may have funding for this type of research. I was wanting to see what some of you may know or have experienced with this type of MG. I started with Ocular MG and it has Generalized now, sure is a lot more to this than I would have ever imagined. Thank you for any information that may help me understand this new thing here.


Bear
deleted_user
deleted_user
I am not sure why your insurance wouldn't pay for additional testing?
Do you know which test(s) are being proposed? You may have to talk to the insurance company and find out why and then appeal it if the doctor and you think the tests are needed.

Couple of links with testing info

http://www.mayoclinic.com/health/myasthenia-gravis/DS00375/DSECTION=tests-and-diagnosis

http://neuromuscular.wustl.edu/mtime/mgdx.html
mgot
mgot
The local university hospital MG specialist at a multiple physician neuromuscular clinic started me off on Mestinon on my first visit before my labs or testing had even come back and before anything else had even been scheduled. I was fine being treated as otherwise non specified muscle weakness for years with my prednisone and Mestinon. The advantage was not having the Dx on any medical records for job hunting, some insurances etc. I got the same meds and treatment I needed. All my original neuros also keep me on high dose prednisone 60mg For many years before that. The tests and Dx change did not add any benefit. I now can't easily change jobs in my particular field. My current neuro fellow even says so,(ADA has not held up for some medical job apps in this area) but they now put the MG on all of my records. I am now uninsurable for life insurance with this Dx now on my records. I started with ocular, progressed to generalized but now my bulbar and breathing problems are the most problematic of my symptoms. Do all of your appeals and any other hoops you need. In the end if it getting testing does not happen it is not the end of the world. Just have the docs let you trial the medications, if they work and you can get the scripts you need and the access to appropriate treatment is what truly matters. Function over form. Good luck.
bear57
bear57
Russ I believe she called it a Tensilon test I don't even know if I spelled that right. I think they may want a ginni pig hey I am there man why not I have been on a lot of drugs the last two years and who knows maybe something to help us all feel a little better may come out of it. Thank you both for the information will let you know when I get a phone call to go and talk to these people should be interesting maybe even fun.
strizzlow20
strizzlow20
Mgot, where have you gone for life insurance? I have two plans and they both know I have MG. I have this and a hospital income policy through state farm.
momsotired
momsotired
When you get an appointment at the university you can always call ahead of time and see if they can call your insurance to see if they will cover whatever is being proposed. I suspect your first visit will just be a consultation.
The tensilon test can be done in an office - but although it can give a neuro a good idea of what is going on, I don't think a positive test definitely means you have MG. I think this test can be positive in other diseases as well.
Good luck and definitely call first!