Ari Maayan

Mark, you and I are on the exact same drugs and dosages. You’re the only one I found that matches my therapeutic regimen exactly. I only wear reading glasses, because sometime back, I had cataract surgery and improved my vision and down to the point where I only need reading glasses. I periodically have mild blurred vision, and double vision. B…[Read more]

Hi Jodi,

I was diagnosed with both ocular and Generalized MG about 6 or 7 years ago. Can’t remember. I am a fully and permanently disabled U S Marine. Most of my disability is Severe PTSD, Major Depressive Disorders. I have been in therapy since 1967. I have been repeatedly locked up for suicidal ideation and have attempted suicide twice.  But I…[Read more]

Wow, John,

That’s really scary. Thanks for sharing. Glad you survived it!!!!!

<p style=”text-align: left;”>Audrey, Imuran and Mestinon are two completely different types of drugs and replacing one with the other for the purpose of creating the same result is not going to happen. Mestinon is fur muscle weakness cause by the breakdown of acetylcholine, a neurotransmitter needed to make muscles function. Imuran is an…[Read more]

Thanks for the warning Louis!!!

Hope you are doing well now John. Different people have different kinds of responses to almost every drug that we in the MG community. I have no negative response to my 200mg a day of azathioprine. Good luck!!!

I am a REAL late onset MG person, 73. My first symptoms were identical to a full blown stroke with every symptom that entails. I was hospitalized in a major teaching hospital in Las Vegas and had 5 neurologists exam me and they couldn’t figure out what was going on with me. I have been on azathioprine for 11 months and I haven’t had a single pro…[Read more]

Reply to Bobbie. WowBobbie, you have really been put through the ringer. I had a similar, although less dramatic experience. I had my first myasthenic crisis before I was diagnosed with MG. One sunny day in Las Vegas I suddenly experienced every symptom of a full blown stroke.  I got taken to the VA hospital by a friend (since the morons at the…[Read more]

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???