[Ari Maayan]

I have gMG and oMG which means 2 days a month of IV/IG, plus 2 days a month of an infusion of Ketamine, as I participate in a clinical trial at my VA hospital. So you might think, hmmmm, 4 sticks a month….not so bad. I wish that were true. Unfortunately, I am one of those, “Difficult Sticks”. I have rolling veins so they tell me.  Getting access to vein can be a major challenge. It once took one and a half hours to finally get a vein and then during the hour long infusion of ketamine, the needle popped out of my vein but stayed subcutaneous  which resulted in a subcutaneous bubble, the size of a grapefruit. Not fun.

So, my care providers have been on my back for a long time trying to get me to agree to get a port. I have resisted due to fear. All of the fears that everyone (I believe) who has a port has dealt with before agreeing to get one.

I had hoped to see lots of negative feedback about the port in this discussion chain. I was a little shocked because those negative comments, for the most part, didn’t appear. That doesn’t mean that I have decided to get a port but I will invest more time and effort into getting a broad range of opinions, especially in the medical literature. To date I have resisted putting that effort into my “research project”. I will now do so.
Ari Maayan, PhD

[Ari Maayan]

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 and multiple generalized anxiety disorders. I have been in therapy since 1967. I have been repeatedly locked up for suicidal ideation and have attempted suicide twice.  But I am still here and fighting the good fight.  My mental illnesses are not like something that I can put into a garbage bag and put out by the curb and have the garbage man take it away. These things are always with me. But I take my meds and go to my therapy and do the best I can. I see my MG as a blessing. It’s another challenge on my pathway. Another way of proving to myself that I can take anything that life throws at me and keep on keeping on. Down (sometimes) but never OUT!!!

[Ari Maayan]

Wow, John,

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

[Ari Maayan]

<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 immunosuppressant drug. It suppresses antibodies, including, but unfortunately not restricted to those that would otherwise take up the acetylcholine receptors on the muscle tissue. Two different drugs that act in completely different ways to help us poor devils with MG. But, one doesn’t replace the other and I am sure that your mother’s neurologist wasn’t intending that. But I certainly hope that, whatever is prescribed for her, that she tolerate it well and it helps her immensely.</p>

[Ari Maayan]

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 problem. Of course my RBC count is low but that’s to be expected. I was on a well-greased downhill slide before I started azathioprine. I am on 200mg a day. Also on 240 mg a day of mestinon and 45 mg of IV/IG once a month.

[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 so exhausted within less than a minute that I have an ocular crash!!!

[Ari Maayan]

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 lane. No fuzzy presentation. They were both crystal clear. I thought to myself, “Hmmmmm, which bus should I get on?” In a few seconds only 1 bus pulled up to the bus stop. Not knowing that I had MG, I was astounded. A week later I had a Full Monty myasthenic crisis with every symptom of a full blown, full body stroke; couldn’t walk, talk, speak, use my hands, couldn’t swallow. I mean the whole 9 yards. Now a few years later I have both ocular and generalized MG. In the past 5 years I have been hospitalized with a myasthenic crisis 7 times and have coded twice. My ocular symptoms are daily. By evening I can’t read or watch TV. I am on 300 mg a day of mestinon, bi-weekly IV/IG and 150 mg a day of Azathioprine.

[Ari Maayan]

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.

[Ari Maayan]

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 surgeon to have been in there rooting around in the 1st place. There’s a tiny amount of data in the literature that vaguely hints that MAYBE there might be some curative value to have a thymectomy. But, if anyone is considering it do your own research. A thymoma is not an aggressive tumor with a very lazy way of going about metastasis. But talk it over with an oncologist and do your own research. Then decide.

[Ari Maayan]

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 is a hammer, all the world looks like a nail. We are all born with a thymus and in most cases the non-functioning gland atrophies by adulthood. In my case I had a fully developed thymus still at the age of 75, but no thymoma. But since the surgeon was already in there anyway, he took out the thymus. No benefit to my MG, but why the heck. He also did a MAZE procedure to down regulate the electro transmitters in the atrium of my heart. This turned out to be curative for my AFIB. Well, 2 out of 3 ain’t bad.

[Ari Maayan]

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 supports any curative benefits to a thymectomy. If the thymectomy is for a thymoma, I have read that there is a small chance that the removal of the thymoma MAY be curative for MG. But don’t take my word for it. Do your own research before deciding.

[Ari Maayan]

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 following Tuesday. First I freaked. And then I called a friend of mine who is a clinical psychologist with training from the Institute of Noetic Sciences. She worked with me for hours over the next 3 days in helping me with designing a set of guided imagery meditations. They were basically built around my imaging myself at a point beyond my surgery and complete recovery from cancer. I saw myself at my next birthday party and my children’s next birthday party and saw myself a picture of health and completely enjoying myself with no physical infirmities. Then I pictured myself and my wife taking a vacation on a beautiful beach and noticing myself in my swim suit being quite a bit heavier than I was at the time of the surgery   Obviously I was not going to die because I had all of these things that I had to live out in my future. Needless to say I made it thorough the surgery and subsequent treatments. The morning of my surgery I was relaxed enough to have my entire OR team laughing at my repertoire of risqué jokes while I was being prepped for the surgery. Obviously I made because my ghost can’t operate my cell phone.
Then in 2018 I had open heart surgery to replace my mitral valve, a MAZE procedure for atrial fibrillation and a thymectomy. I used the same technology for that surgery as I had used for the cancer surgery. And here I am at age 78 trucking along in my daily struggle with MG. And I still meditate on a daily basis and at least one of my meditations is a guided imagery in which I am a little old man…..which I am not now by any means!!!!

[Ari Maayan]

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 still 2 weeks away from being properly diagnosed with MG. When I went to the emergency room of a VA hospital the emergency department physicians were sure that I was having a stroke. But the only way to confirm that would have been to give me an MRI but they refuse to do that because I had a small coil loop recorder implanted underneath my left breast to monitor my atrial fibrillation. They said that my coil loop recorder would damage their MRI equipment. But they kept me for 2 days during which time no neurologist saw me. So I checked myself out against medical advice and took an ambulance to a different hospital. They immediately gave me an MRI and told me that I was not having a stroke but they didn’t know what the problem was and none of my symptoms had abated during that time. During the following two days I was seen by their entire neurology staff five board-certified neurologist and none of them knew what was going on with me. My symptoms slowly abated and they released me from the hospital. Two weeks later a VA neurologist told me that he thought I might have MG.  So they tested me and VOILA…..MG. On the other occasions, I actually flatlined. The first time was when I was at home and I began experiencing severe difficulty breathing and I called an ambulance. At the very second that the ambulance pulled up in front of the ER, I went into full respiratory arrest. The ER physicians saved my life by intubating me and giving me a high dose of a powerful IV diuretic because my lungs had filled up with fluid. What followed was 11 days in the hospital with IV I G and IV anabiotic’s. But they saved  my life.

 

What followed was 11 days in the hospital with IV I G and IV antibiotic‘s. But they saved my life.

The third time, I was already in the hospital after having open heart surgery. I was still in I see you two weeks after the surgery when I flatlined. Once again my lungs had filled up and my and stopped functioning. That was followed almost immediately by cardiac arrest. I had a full team of physicians and nurses rush into my room and they manage to save my life.

I have constant symptoms on an every day basis but compared with my more dramatic “flare ups” they are a mere annoyance.
what I think is killing me is my fear was I wait for the next major event in living with MG.

[Ari Maayan]

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. When I try to talk to them about it, I can tell that they are sympathetic but I’m just not getting it across. I have realized just in the last few days that having them sign up for this site may be a way of having them “get it”.  Thanks to you all. You are a blessing in my life.

[Ari Maayan]

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.

[Ari Maayan]

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.

[Ari Maayan]

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???

[Ari Maayan]

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?

[Ari Maayan]

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.

[Ari Maayan]

I take 360 mg a day of pyridostigmine in 4×60 mg doses. Now comes what may be kickback from the drug or just the symptoms of MG. I have real bad dry eye in my right eye when I wake up in the morning. I’m sure it’s a symptom of the MG. It’s my ocular MG. I don’t use a CPAP or BiPAP, so there’s nothing blowing on the eye. It simply doesn’t close at night.

The other thing is constant inflammation of the gums and roof of my mouth. Now, that might be because of the pyridostigmine. MAYBE. It won’t go away even though I use 2 therapeutic toothpastes. I’m stymied.

[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. But it’s not anything to write home about. As I get close to the end of the day, one of my eyes, usually the left one begins to drag on till it’s almost completely closed by mid evening. Here’s the other strange thing. When I’m asleep my right eye stays at least partially open, so that when I wake up in the morning, I have a terrible burning pain in my right eye because it’s been mostly open most of the night. All the best to you.

[Ari Maayan]

Thanks for the warning Louis!!!

[Ari Maayan]

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!!!

[Ari Maayan]

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 VA don’t take ambulances). I got checked into the ER. Although my symptoms were completely like a severe stroke, they refused to do a cranial CT. This was because I had a small coil loop recorder implanted below my left chest muscles. They said it would damage their machine. I had previously had CT’s at a civilian CT provider with no problems, which the VA knew about. But they refused. So I had to write my request for a transfer to another hospital on a pad because my speech was unintelligible. Even that was difficult because my hands didn’t work. When I got to the next hospital, they rushed me into the CT Room immediately and did a cranial CT. Then they told me that I was not having a stroke but they didn’t know what was going on. I was admitted to ICU but they weren’t doing anything for me because they had no idea what was going on. I saw all five doctors from their neurology department and none of them could understand what was going on with me. after several days, my symptoms began to abate, so they released me with no diagnosis of any kind. Two weeks later, I got a phone call from the neurology department at the VA asking me to come in. I went in and talk to a neurologist, Dr. Vicente, and he told me that he thought that I had MG. But it couldn’t be diagnosed at the VA, so they sent the specimen to Atlanta where finally I was diagnosed with MG. So, fellow sufferers, I’m sure that it is clear to us that we may have MG but there’s no guarantee that any physician that we may see will correctly diagnose it. And we pay the price.