ALWAYS do your own research before you accept any drugs. I have both ocular and generalized MG and I have been prescribed medications 3 times in the past 4 years that are seriously contraindicated for MG!! View
It sounds like you have through the ringer with surgeons. I have studied the literature on the link between MG and the thymus and thymoma. I have 48 years as a researcher and professor in biomedical sciences. I simply can’t find anything that would have convinced me to have a thymectomy if I didn’t already need for the cardiothoracic sur…[Read more]
Amy you are correct. A thymoma is a tumor of the thymus. They are known to be low risk for metastasis. Therefore the issue of whether or not to have a thymectomy is a case by case call to be made between the patient and the physician. It’s better if the physician helping with the decision is not a surgeon. Surgeons love to cut. If all you have i…[Read more]
I am a scientist who has been deeply involved in biomedical research for 48 years. My PhD is from the Faculty of Medicine at Hebrew University of Jerusalem. When I get a personal issue that I need to deal with I make a concerted effort to dig deeply into the medical literature which is what I have done regarding my MG. I have found nothing that…[Read more]
Several years ago I had 17 1/2 hour surgery for metastatic cancer of the esophagus. Before I went in for the surgery the surgeon told me that the surgery was as bad as it could possibly be and that I had a 25% chance of going from the OR straight into a refrigerator. That was on a Friday and my emergency surgery was scheduled for 6:00 am the…[Read more]
Fear. As a survivor (I survive from day to day) I live with fear of my next flare-up. I don’t have frequent flare-ups, thank God but they have been potential killers. In the time of my 5 years of living with this condition, I have had 3 really severe “flare-ups”. The first consisted of all the symptoms of a full-blown stoke. At the time I was st…[Read more]
Unfortunately, we are afflicted with a disease that is not highly recognized by the casual observer and not understood by almost no one that we have contact with, even relatives and close friends. I have 3 adult children and a small group of close friends. Even they don’t get what is going on with me and have no concept of it’s ramifications. Whe…[Read more]
Thanks for your response regarding 400 mg of ibuprofen before bed. Unfortunately I can’t take any of the OTC analgesics. I have had my gastrointestinal system completely rearranged by a 17 1/2 hour surgery for stage 3/4 cancer of the esophagus.
I am now taking 300 mg/day of mestinon. I suffer from frequent and urgent bladder issues during the day and frequent but difficult to get flow at night. I recently started taking nutraceuticals for enlarged prostate although I haven’t received that diagnosis.
Ilene…..your thymus gland has grown back??!!!??!! I had no idea that could happen. I read that we are born with a thymus but by adulthood it has been reabsorbed into the body. Do I have bad information???
I never let anyone see my sternum scar. I don’t like looking at it myself although it is one of many that I carry. It’s right there in the mirror when I brush my teeth. It’s been almost 3 years and I guess it’s not going to look any better. But I wince every time I look at it.
I am sorry to hear about your difficulties with your MG. I hope that you will soon be on the upswing. I have read that it is not a good idea for folks like us to take muscle relaxers. The way our autoimmune disease works is similar to what muscle relaxers do. Maybe someone has more complete or different information than what I just…[Read more]
I suffer terribly from cramps in my calves and feet. I have to get up in the night and place my hands against the wall with my feet some distance from the wall so that I can stretch out the cramping muscles. I eat 2 bananas a day but they don’t help. I take 4 X 60 mg a day of mestinon. My neurologist says that the cramping is because of the mes…[Read more]
I was diagnosed with MG about 5 years ago. My introduction into this new event in my life was like being run over by a freight train. I don’t know if anyone else has had this experience but I haven’t seen anyone on the forum describe my, perhaps unique experience. A few days before the main event I began having severe double vision. Then not long…[Read more]
Hi Ari! I am so glad to hear you are enjoying the forums. I am 22 and was diagnosed a year ago. I had the same scary stroke-like symptoms as you. Double vision for a month and then quickly every crisis MG symptom except breathing issues occurred. I am super thankful that the doctor at the smaller hospital I went to could diagnose it within 24…[Read more]
ALWAYS do your own research before you accept any drugs. I have both ocular and generalized MG and I have been prescribed medications 3 times in the past 4 years that are seriously contraindicated for MG!!
Hello, Ari! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, and families! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself with our forum rules in the…[Read more]
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