Ari Maayan

Maureen, that’s where my eyes get to late in the day. Burning, can’t keep them open. I keep a eye mask in the freezer. It helps the burning but not the inability to keep my eyes open. I have found another issue with ocular MG. Recently I have been hospitalized AGAIN for an MG crisis. When the doctor does the follow my finger routine, my eyes get…[Read more]

My very first encounter with MG before I was diagnosed was a very interesting experience. I was standing at a bus stop in Las Vegas waiting for a bus. After a while I leaned over and peaked out of the shelter to look down the street to see if the bus was coming and WOW!!! There was not 1 bus, but 2. One in the curb lane and one in the middle…[Read more]

I agree with you Michelle.  I can’t watch them anymore. I feel that they are insensitive to people, not only like us but people who also have illnesses similar to ours who suffer from trauma related to their own illness.

Amy,

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???

To: Dean Counts,

Everything that I have read warns MG people not to take magnesium supplements. The word online is that they are highly contraindicated for us folks. How are you doing on it?

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.

Kenneth,

As you may know, excessive heat, excessive cold….and of course alcohol can trigger a myasthenic crisis.

Best wishes,

Ari

Hey Tim,

Great to read about your recovery. May you get better and better every day!!!

Good thinking Tim.  Glad to hear that you are on an upswing. Hang in there Buddy!!!!

Hi Tim,

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]

Thanks Craig,

Maybe the 2 bananas isn’t enough potassium because I take 240 mg a day of mestinon. I’ll try the Gatorade. That didn’t occur to me. Or I will take a daily supplement.

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]