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...
Hi, My brother was diagnosed with MG last year. He was treated with IVIG treatments initially and then prednisone which caused a psychotic episode for which he was hospitalized for. His neurologist ordered IVIG treatments which was denied by his insurance. He is now back on prednisone which he just started this week.My question is for the last 3 months when he is standing he has a sensation like he is on a boat were things are rocking and rolling. His neurologist doesn’t think it is caused by his MG. He has been seen by ENT and had testing for inner ear problems that was ruled out. Has anyone else experienced these symptoms ?
I hope your brother's experience with Prednisone is better this time. If you live near a city, maybe outpatient plasmapheresis is an option until one of the steroid-sparing immunosuppressants takes effect. My neurologist mentioned that subcutaneous IG (at home injections administered by the patient) might also be a possibility. I think SCIG is less expensive than IVIG because it is self- administered.
- Nan
There is something like this with various causes:
Mal de Debarquement [dee-BARK-ment] Syndrome (French for “Disembarkment Syndrome”): rare balance disorder that causes a lasting sensation of motion sickness even when the cruise, airplane, or car ride is over; can also be accompanied by fatigue and difficulty concentrating.
The fix for it
https://www.mountsinai.org/about/newsroom/2014/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds
Good luck
Russ