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...
Well finally enough time has passed since my crisis in June (my 'lost' month in the ICU and hospital) that I could finally have the Rituxan treatment series. I have had the first 4 treatment cycles and for the first time in a good year I am seeing improvements in my MG.
While the Rituxan treatments are not too bad, it is still chemo and does take its toll on the body for a while. I am taking this month off to go through the series and after now 4 weeks I found that for the first time I noticed real improvements in my hands, for the first time it was easy to tie my shoes. It had been getting tougher this past year, but for about 5 days now my legs just work better and my fine motor control has improved. I am slowly recovering from the treatments as they do make you tired
Certainly I also wanted to wish all here a Merry Christmas and a happy holiday season. Thanks for all of your support this past year, it has meant a lot.
Joe
While the Rituxan treatments are not too bad, it is still chemo and does take its toll on the body for a while. I am taking this month off to go through the series and after now 4 weeks I found that for the first time I noticed real improvements in my hands, for the first time it was easy to tie my shoes. It had been getting tougher this past year, but for about 5 days now my legs just work better and my fine motor control has improved. I am slowly recovering from the treatments as they do make you tired
Certainly I also wanted to wish all here a Merry Christmas and a happy holiday season. Thanks for all of your support this past year, it has meant a lot.
Joe
-
This isn't really bipolar related but there is never anyone on the parenting groups, this is the most active group I've been in.My 6yr old son has really bad seasonal allergies and they're in full force right now. He gets a terrible cough; he coughs all day and all night, making it hard for him to sleep, and his nose runs.I've tried every allergy medicine, OTC and RX, and none of them affect his...
-
Is anyone here allergic to Sulfa that is currently taking Diamox? I have been diagnosed with IH now for almost 2 years. I am allergic to Sulfa drugs meaning that my throat will swell up so my Neurologist put me on Topamax. I was suffering from major loud whoosing noises and the topamax helped that but everyday I still hear those mainly between 6 - 12 pm. I am at my wits end and have not went...
Dee don't worry too much about the Rituxan side effects, for my experience it curretnly includes being achy, tired and generally off somewhat. I would say like a mild flu. From what I have heard overall the side effects are a lot milder than other forms of chemo. In this case the Rituxan is very new and it targets only a single cell type which does help reduce the side effects. So far and for the first time I am experiencing some real positive changes.
I just read about the real bad issues with your arm and your husbands prostate issues in your other note. I am sorry you had to go through all of that, but you are right we do heal and we will recover. I hope you and your husband continue to do better. Life is a journey and sometimes the path does get tough as we walk through the rain.
Best of wishes for the holidays and the soon to be new year. I hope you can get approved for the Rituxan as well.
Joe
My doctor does not believe in doing it again until the B cells return, so I have an order in hand for another blood test to see if I can get rituxan again. It's been a year now, and I am getting ready for another round of plasmapheresis while I wait.
Glad to hear you are feeling better. You have had a rough year of it.