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...
Hello all- I am a newbie. I have a daughter who was diagnosed with OMG at the age of 3. IVIG and Mestinon were both treatments that were tried with no results. We had to start her on prednisone to see some form of relief. She stayed on prednisone with a decreasing dose for almost 6 years. At that time we started Cellcept treatment and she was able to slowly decrease prednisone until she was no longer taking it.
She is now 17 and was diagnosed with Graves at age 15. Within the last year her myasthenic symptoms have worsened causing increased problems with double visions and ptosis. Her thyroid levels from Graves are still not level---and I believe Graves have increased her myasthenic symptoms. She had to begin a dose of prednisone again last year-- she has been on a small dose of 7.5-10mg in prednisone for the last year. She started using Mestinon and she has seen some improvement with it, lasting only 2-3 hours after dosage.
Neurologist has suggested we try IVIG again. Prior authorization from insurance was accepted (although they cannot tell us how much it will cost???) and she is doing her second day today. 2 days total 4-5 hours each day. When will she start to see results? Is there any information you can share with us in regards to meds, IVIG or anything that will help?
Long term prednisone use is not an option. After using it for those 6 years prior she had growth issues (stunted growth) she did grow to be a little over 5 feet, however currently her bone density is just above the line in which we would start to be concerned.
Any info is greatly appreciated. I feel like this is our last ditch effort to give my little girl some relief.
She is now 17 and was diagnosed with Graves at age 15. Within the last year her myasthenic symptoms have worsened causing increased problems with double visions and ptosis. Her thyroid levels from Graves are still not level---and I believe Graves have increased her myasthenic symptoms. She had to begin a dose of prednisone again last year-- she has been on a small dose of 7.5-10mg in prednisone for the last year. She started using Mestinon and she has seen some improvement with it, lasting only 2-3 hours after dosage.
Neurologist has suggested we try IVIG again. Prior authorization from insurance was accepted (although they cannot tell us how much it will cost???) and she is doing her second day today. 2 days total 4-5 hours each day. When will she start to see results? Is there any information you can share with us in regards to meds, IVIG or anything that will help?
Long term prednisone use is not an option. After using it for those 6 years prior she had growth issues (stunted growth) she did grow to be a little over 5 feet, however currently her bone density is just above the line in which we would start to be concerned.
Any info is greatly appreciated. I feel like this is our last ditch effort to give my little girl some relief.
I was 70 before I was diagnosed. I am now stable IVIG every 2 weeks. mestinon 4x day. 15mg predisone every other day.
currently mending from bad fall and shattered right arm. (1 finger typing).
we are called snowflakes because we are all so different. what works for one does not work for all.
From Pacific Northwest USA
Dee
http://www.womentowomen.com/thyroid-health/iodine-and-the-thyroid-worth-a-second-glance/