[Ari]

I’m not sure that my post is in the right spot but I’ll put it in here. It is an informational bit about new drugs for MG, specifically those that are monoclonal antibody drugs. There’s no such thing as a free lunch.

I have many years of experience in developing monoclonal antibody based diagnostics and therapeutics. My experience goes back to the beginnings of the application of monoclonal antibodies. I’ll use the abbreviation MA

MA based drugs have their place in medicine but they are not the magic bullet that their purveyors would like you to believe. No two people have the same genetic makeup. Therefore when a company puts out an MA drug it’s constructed to target a group of individuals who have the closest gene makeup that their MA product will target with therapeutic benefits with the smallest number of people who will have an adverse reaction to the product. By its nature an MA drug is going to create some unpleasant side effects, as benign as diarrhea on up the scale to potentially lethal effects.

So, if you’re considering taking an MA drug, don’t let the the provider of the drug to “shine you on”. Make them disclose to you the complete list of contraindications of their MA drug and, based on an evaluation of your genome, how likely is it that the list of benefits to you will outweigh the negative impact that you can expect from taking a given MA drug. And I must tell you that this process doesn’t have a very high accuracy of creating a specific list for specific patients that will give you an accurate estimate of the beneficial aspects of the drug as opposed to the contraindications. This is true of all drugs, but when you are putting out a drug that works all the way down to the level of the patient’s genome, well, “There’s no such thing as a free lunch”.

[Ari]

I’m in a small in-person support group in Albuquerque. We actually have more than 20 names on our group list, only 8 of us show up. I think next month we will try to get an online group together. It’s very useful due to the wide variety of how different people’s bodies are affected by the disease.

[Ari]

I hate to hog the podium but in recent weeks my MG (both ocular and generalized) have been on the march. Until recently my ocular symptoms were annoying but not overly disabling. So I might have been a bit smug. But now I’m joining the club with severe pain in my right eye and blinding blurred vision and the right eyelid slamming shut and staying there for lengthy periods. And on the generalized side of the circus, I have graduated from a cane to a walker because I found it inconvenient falling down with alarming frequency. So, who’s to say where it ends?

[Ari]

Just walking up a flight of stairs without having to stop and catch my breath 2 or 3 times. Really needing those 3 grab bars in the shower. Being able to get enough sun to maintain my normal color as a Native American.

[Ari]

My first symptom of MG was both puzzling and amusing. At the time I didn’t realize that I was experiencing a symptom of MG. I was standing at a covered bus stop in Las Vegas, Nevada, waiting for a bus. I stuck my head out from under the cover of the bus stop and looked up the street to see if my bus was coming. It was a 6 lane blvd and what I saw was two buses in the three lanes pointed in my direction. They were clear and distinct, and there was no blurring or fuzziness or anything to suggest that I was not looking at two real buses. When my bus pulled up in front of the bus shelter, there was only one bus. That left me, scratching my head And wondering what had happened. I couldn’t figure out how such a thing could happen and what the meaning of it could be. Within 48 hours, I got the answer. I had my very first full blown, serious, life-threatening myasthenic crisis that put me in the emergency room and then into ICU.

[Ari]

I don’t know if this is tied to MG or not. I will put this out there and see if anyone else has had this experience. About 4 years ago I began experiencing this issue which started with my not being able to find my glasses. I might look for them for 20 minutes and finally found them in plain sight. I progressed to not being able to find other things that turned up in plain sight. That then progressed to not seeing a car coming at me in an intersection. I would stop at a stop sign and look both ways and not see anything coming and I would pull out right in front of an oncoming car. That happened 3 times in one day. I haven’t driven since then and that was 3 years ago. Nothing wrong with my eyes. It’s a disconnect between what my eyes see and what gets transmitted to my brain. Has anyone else experienced this??

[Ari]

The night time severe cramps in my calfs is annoying especially when I have to get up and stretch my legs to make it stop. But, that’s an aggregation. The fatigue is more than an aggravation. It’s making life harder on an everyday basis. But the worst, and it’s getting worse rapidly, is the weakening of the muscles that control the diaphragm. It’s becoming harder and harder to breathe. Now I see why this symptom is the one that kills MG sufferers. It’s killing me I believe.

[Ari]

60 mg 4X plus 2X Azathioprine daily has worked well for many years. However, just recently, I seem to be slipping downhill. I am experiencing the worst that those of us can experience, and that is increasingly weakening muscular strength in my diaphragm. I can’t walk even a city block without needing to stop and sit down 3 times during the walk. I can’t climb a single flight of stairs. My neurologist has set the wheels in motion for me to have a breathing study. It’s not the end of the world, I just will have to start wearing oxygen. I’m 81 and I have gotten this far without it so I can’t complain.

[Ari]

I wanted to add, that I was taking 5 mg a melatonin. I took it for several months and although I can’t describe the effect to melatonin, it seemed to me that my MG symptoms were getting a little worse. I stopped taking the melatonin about two or three months ago, and I am not noticed any improvement in my ability to fall asleep or stay asleep. I have always been able to fall asleep, but I have not been able to stay asleep. Sometimes I wake up after only one hour and cannot go back to sleep. That was even worth checking the melatonin. And I have not noticed any difference since I stopped taking it. So the only effect that I can see from my taking the melatonin was the cost of the melatonin.

[Ari]

Until recently I was walking everyday and managed to get up to about 2 miles at 3 MPH. But one day something hit me. I don’t know what it was, maybe Covid. In any event, suddenly I couldn’t walk 100 yards slowly without feeling like I was collapsing. I have recently gone back on the treadmill and can put in 2 miles at 3MPH. AS Churchill said on air, in England’s darkest hour, “Never, ever, ever, ever give up!”

[Ari]

I’m 81 years old and I was diagnosed with both ocular and gMG about 12 or 13 ago. I’m down to one functional eyelid when evening comes, sometimes earlier. I have coded 6 times with complete breathing failure. Lucky to be close to a hospital. Lately I’m experiencing pretty serious balance problems and falling. Just tore the cartilage in my right knee. It only hurts when I laugh 😆

[Ari]

This is for Liz and also for Theresa.

Many years ago, long before I ever heard of MG, I was diagnosed with stage 4 Adenocarcinoma. I had a 19 1/2 hour surgery during which I had the bottom half of my esophagus and the top half of my stomach removed and they did a gastric pull through to connect the two. Then they detached the vagus nerve from my gastrointestinal system and did a pyloroplasty which opened up my pylorus valve so that I would have a gravity feed system, since the vagus nerve had been detached from my gastrointestinal system. Then they did a resection of about a dozen lymph nodes , resection of my spleen, gallbladder, right kidney, partial resection of my right lung after removing the fifth rib on the right side you saw that they could get the rib spreaders in to get to my right lung.

After this, I lost 100 pounds. I came to live with my new self slowly and painfully. Fast forward many years, about eight years ago I was diagnosed with. gMG and oMG. SO MY MG HAS TO LIVE WITH MY REARRANGED ORGANS IN MY CHEST CAVITY AND MY ABDOMINAL CAVITY. Then five years ago had open heart surgery. The surgeon decided that while he was in there, he might as well remove my thymus. So he did, unfortunately, I did not have a thymoma, so there was no curative event from removing thymus. I have regained the hundred pounds And it was a good thing that I regained it before MG. Because now like many others I can eat only small amounts of food. I bought one of those little roasted chickens today at Whole Foods. You know there are nowhere near the size of the roasted chickens at Costco. I was able to eat one drumstick and the thigh to go with it. Absolutely stuffed. That was about five of hours ago and I haven’t been able to eat anything since. So the weight is coming off again. Well enough of this odyssey. God bless you all.

[Ari]

I’m an 8 year passenger on the gMG Bus. Until about 4 months ago my weight remained stable, a little overweight but not unhealthily so. But 4 months ago I began losing weight at the rate of 1 pound a week, 16 pounds in 4 months. And it doesn’t matter what I eat regardless of the calories. I’m still in the healthy range but if it continues, let’s say for another 4 months it’s not going be in the healthy range. I am mildly disturbed at this point. But if it goes on I will not be amused. Several years ago I had Stage 4 esophageal adenocarcinoma. I had a 19 hour surgery and follow on treatment. I beat the odds. But during that time I lost 90 pounds in the space of a year. So I get a little freaked out when my weight slides and my diet is not arresting the slide.

[Ari]

5 years ago (I was already a passenger on the MG bus) I had open heart surgery. The surgeon decided, what the hell, he was in there anyway, and he knew that I had MG so he went ahead and did a thymectomy. Unfortunately, for me, I didn’t have a thymoma. So, no change in my condition. The research that I’ve done shows that if you have a thymectomy and there was a thymoma in there, there is a small chance that the thymectomy may be curative that’s all the news that’s fit to print

[Ari]

My physical therapy is limited to the VA. As such it is very limited because they are overwhelmed. At best once a month for an hour. Right now my PT wants me to focus on balance exercises. I have tried, gently, to get her to understand that what’s going on with me is not “fixable” by physical therapy. It’s MG!!!!!!

[Ari]

I’m not sure where to put this, so I’ll post it here and see what happens. I have a lot of topics I need to discuss but today, my MG family, I would like to discuss a topic that I haven’t seen discussed but I’m sure affects many of us – balance problems. I think there’s an inherent aspect of MG that has a negative impact on our ability to balance when standing and/or walking. It is a major issue for me and has been getting worse in the 8 or so years since I was diagnosed with MG. And the issue that goes along with it is encroaching muscle weakness. Right now I’m working with my PT at the VA on my balance problems……and they are serious. I fall fairly frequently even using my cane. I think that my combat-related PTSD is a contributing factor.

Anyone want to add to this??? I hope so.

[Ari]

Fast forward from the first, almost comical episode of double vision. I have now had to surrender my drivers license. Thank God my wife doesn’t mind being my chauffeur. Blessings to all my MG family.

[Ari]

I have not had a decent night sleep in years. So far I have not taken prescription sleep meds. I take OTC little sleep pills and drink about a quarter of a bottle of dextromethorphan. There are times when I get three hours sleep or maybe a little more. But usually it’s one and a half maybe two hours. And then I’m up. No, it’s too late for me to do anything about it because I believe that the biopsy that I’m having tomorrow is going to prove that I have metastatic on cancer that has spread to numerous other organs. So sleeping will be the least of my worries.

[Ari]

Michael, you are SO right. My helper came today to do some things for me, like drive me to places I need to go. I can’t drive anymore. So, I rode in the car for 10 minutes, walked 50 feet into the store. Shopped for 20 minutes. She loaded the groceries into the car and drove me home. By the time I got back into my apartment building I was too wasted to even walk to my apartment.

The thing is this. I was diagnosed 10+ years ago and have been pretty much able to do almost anything within reason. Not anymore. Welcome to the club Boyo!!!!

[Ari]

When I was a newbie to MG, I read that we should avoid magnesium. And so I have for all the time that I have lived with our favorite malady. But about 4 months ago I started doing deep research into the metabolic functions that require magnesium in order to function properly. So I started taking it about 3 months ago and I have not had any issues with any of my mg symptoms. The type I am taking has 7 types of magnesium in each capsule. The only one missing is magnesium sulfate. So far I’ve not noticed any issues with it.

[Ari]

Lucky you!!!

[Ari]

I have been taking melatonin for many months. I think that my MG is getting gradually worse. I also think that it is doing nothing for my insomnia. I’m quitting as of right now.

[Ari]

I understand about tripping when walking outside. I had a doozy a couple of weeks ago when I fell trying to walk through a graveled area. Dumb!!! MG means that we have a compromised immune system already. Who prescribed mycophenolate for you. I understood that it was an immuno suppressant. Am I wrong? All I best to you.

[Ari]

I wanted to add one thing further regarding ocular MG. I’m not troubled now with double vision. I do have severe drooping eyelids. It’s usually the left eye. If comes on later in the day when the compromised muscles that control the eyelid gets weaker. It closes all the way and no amount of struggling can open it. Anyone else with that issue????