What’s It Like?

From those who are unfamiliar with the condition, I’m frequently asked, “What’s it like having Myasthenia Gravis?”

Before I begin, allow me to issue a disclaimer. I’m not a physician or medical professional. The symptoms I describe below are the symptoms I experience, some of which could possibly be as a result of age or other condition(s). I simply don’t know which symptoms are attributable to Myasthenia Gravis and which may be the result of something else. All I can do is share what I experience in the most accurate description I can. Bear in mind, symptoms vary and not every person with MG will experience the same symptoms. Sometimes those symptoms may seem like they disappear only to return at another time. Some with MG may experience symptoms I’ve not described and all symptoms vary in intensity from person to person.

From my experience, the process usually starts with a symptom which leads a healthcare professional to suspect some kind of neurological condition. In my case, my ophthalmologist referred me to my primary care physician when they noticed changes to the optic nerve in one of my eyes that was consistent with Multiple Sclerosis. After several scans and tests, I was referred to a neurologist who conducted additional scans and blood tests. Those tests ruled out Multiple Sclerosis but resulted in even more testing for other types of neurological and autoimmune disorders.

It was a scary time. I was even tested for ALS or Lou Gehrig’s disease which was the most difficult 10 days of my life while I waited for the results to come back. Thankfully, those results came back negative. I was shuffled between doctors until a different neurologist determined I was “Suspect for Myasthenia Gravis”. Back in those days, there were specific markers in your blood that were used to determine Myasthenia Gravis (MG), but although I had symptoms, those blood tests continued to come back negative. As my neurologist explained, a positive test confirms MG, a negative test doesn’t rule out MG. It just means I didn’t have the type of MG detectable by the tests.

What were the symptoms I was experiencing? They were pretty classic symptoms of MG where my eyelids would droop, I had difficulty swallowing and I had significant weakness in my legs. In spite of these symptoms, the blood tests available could not confirm Myasthenia Gravis. So little was known about MG at the time and since it was relatively rare, not a lot of dollars were going toward research into MG. The next step for me at the time was an eyelid biopsy, but there was a problem. This all happened at a time when insurance was a huge factor. It was common practice for any medical insurance company to apply a “pre-existing condition” exclusion when changing insurance or even jobs. A “pre-existing condition” could also cause life insurance carriers to refuse to write a new policy or write a policy that excluded any complications as a result of that pre-existing condition. In other words, a positive diagnosis could result in a catastrophic financial burden for medical bills that insurance would not cover. That’s something I needed to avoid at all costs because I had two young daughters. As a result, I chose not to undergo the eyelid biopsy or any further tests.

I was fortunate, that instead of my symptoms getting worse, I somehow went into remission and my symptoms actually reduced. I still had some symptoms when I got tired, but they weren’t as severe as they once were. I remained in remission for the next 20 plus years.

Fast forward. In 2022, we moved to Louisiana and I contracted COVID-19. I got through that okay, but in 2023 my MG symptoms returned, but this time they were worse. Not only were my eyelids starting to droop more, but the weakness in my legs returned and I began to occasionally experience brain fog. A few months later, I caught a cold that I wasn’t able to shake. I decided to see my primary care physician. During that visit, I told him about being “Suspect for Myasthenia Gravis” and that symptoms had returned. Insurance laws had changed regarding pre-existing conditions and a person could no longer be refused coverage, so I no longer had to fear not being able to retain or acquire insurance. He immediately sent me to a neurologist.

My new neurologist was very thorough and put me through a battery of tests, including many repeats of previous tests plus a slew of new ones for MG markers. They all kept coming back negative, yet my symptoms persisted. He explained to me that we are still learning about MG and just because the blood tests were coming back negative didn’t mean I didn’t have a type for which a marker had not yet been discovered. He decided to start me on Pyridostigmine Bromide (Mestinon) to see if that made any difference. Upon taking the new medication, I immediately saw an improvement in my symptoms. It was like night and day. I had energy again and my wife saw the difference as well. She commented how I no longer looked as tired as I had been looking. My neurologist performed a few more tests and then confirmed a diagnosis of Seronegative Myasthenia Gravis. He explained to me that COVID-19 may have triggered the MG out of remission.

Why am I telling you all of this when you simply asked what’s it like? Diagnosis of MG can be one of the most difficult parts of the journey. Most people are confirmed with a marker in the blood, but about 10% of the people with MG are seronegative. Seronegative means I tested negative to all of the known markers, but there may be markers out there for the type of MG I have that current research has not yet found. Marked improvement upon taking Mestinon coupled with other clinical tests he performed provided my doctor with enough information to make a positive diagnosis for Seronegative Myasthenia Gravis. So, now we could concentrate on treatment.

What do I experience? The Mestinon has helped significantly, but my symptoms don’t go away completely. They still flare up, especially towards the end of a dose. I take Mestinon every four hours, so around hour three, my symptoms start to show through. They are worse later in the day and evening. They usually start with my eyelids drooping, my right more than my left. I always have double vision, but it also gets worse toward the end of a dose and in the evening. I’ve learned to adjust to the double vision and it affects reading more than distance. I actually see one letter lighter in shade and slightly below each letter. I call it a “Shadow Letter” because it kind of looks like a shadow of the letter directly below the real letter. I don’t know how to demonstrate it to you, but it looks pretty funny when you see it. You get used to it and learn to read around the shadow letter.

My voice begins to change, especially when I get tired. It becomes raspy and hoarse. It takes more effort to get the words out loud enough for anyone to hear and understand. My legs become fatigued and often ache like I had just run a marathon. Getting out of a chair becomes more difficult and I often need to brace myself and use my arms to help lift me out of the chair, especially if I’ve been sitting for a long time. Sometimes I experience brain fog. It’s difficult to describe, but I often shake my head in attempts to clear the fogginess. By the way, shaking your head doesn’t work. I don’t know why I even try, but I do.

Have I mentioned the drooling? This is a funny one. I walk the dogs every day. Usually at some point during the walk, I start drooling out of the right side of my mouth. I’m quite embarrassed about this when I’m around people, so I try to hide it as best I can. I’m just thankful for shirt sleeves when it happens.

This next subject is not easy for me to discuss. It’s embarrassing and I don’t discuss it with anyone. It’s been my little secret. If, however, this blog is going to help someone, then I need to paint the full picture and not selectively choose the topics. I warn you that this can be both gross and delicate, but I wouldn’t be doing you any service by holding anything back. Sometimes there is urgency and sometimes even leakage. Leakage? Yep. The muscles in your lower abdomen can be affected by MG and temporarily weaken. This includes muscles used by the sphincter muscles in either the urinary or digestive systems, or both. Usually the urgency acts as a warning and allows you to dash off to the bathroom, but sometimes you get no urgency warning. I don’t need to say any more. It hasn’t been bad yet and I hope it doesn’t get any worse, but if it does, there are products on the market (like Depends) that can help. If you’re a caregiver, a family member or friend, just be mindful of this. We are embarrassed to talk about it, but it can happen.

I try to take a short nap each afternoon to help me get through the day. Without the nap, symptoms worsen late afternoon. At night my symptoms are worse, so I usually go to bed around 9:00 PM. The weird thing is I’m up by 5:00 or 6:00 AM every morning without any alarm. My body is telling me it’s been in bed too long and it’s time to get up. I start my morning meds and it’s another day all over again.

Colds and respiratory infections can be a major concern for me. When I catch a cold and begin to cough, my diaphragm muscles tire easily. Once this happens, I’m unable to forcefully cough to clear my airway. This often leads to choking and turning red/purple to the point of passing out. It’s not only scary for me when that happens, but also for those around me. There’s always the fear of a myasthenia crisis which requires a ventilator in order to breathe. Years ago, many people who went into a myasthenia crisis ended up dying. Today that number has been reduced to around 10%, but it’s still a concern. To put it into perspective, only 0.02% of people in the world have Myasthenia Gravis (20 out of 100,000) and only 10% of those with MG have Seronegative MG (so 2 out of 100,000). In other words, I have what is considered the rarest kind of the rare disease Myasthenia Gravis. So, thinking I’m safe with only 10% of people with MG experiencing a myasthenia crisis is foolhardy, to say the least.

MG can also take an emotional toll on its victims. Many suffer from depression. Not being able to do the things you used to be able to do is difficult for anyone, but knowing MG is a progressive disease makes it even more depressing. That’s why I try to focus as much as I can on the positive. You’ll find in many of my blogs that I try to stay upbeat and live a “The sun’ll come out tomorrow” philosophy. It’s important for me to stay positive and I do that by trying to help others through their journey with MG. Sure, I have bad days, but I also have good days and those are the days I look forward to. There are times when I feel my body is just worn out. There are days where I’ve pushed it too far. On those days, I need to rest, I need to recover. While I’m recovering, however, I try to think of how I can use that experience to help others.

So, what’s it like for me? Good days and bad days. Drooping eyelids, hoarse raspy voice, weak legs, unable to carry anything of weight for any distance, drooling, the other thing I won’t mention again. In other words, not fun, but I’m blessed it isn’t any worse and that’s where I’ll continue to focus.

As a caregiver, a family member, a loved one, or a friend of a person with MG, thanks for being patient and understanding with us. Thanks for being there when we need you. Thanks for giving us strength, both mentally and emotionally. Just remember, sometimes when you see us struggling, it’s harder for you to see than it is for us to tolerate. So don’t go easy on us, but at the same time, remember we’re not always going to be at the top of our game. Sometimes we just need a hug.

One more thing, if my blogs touch you in any way, please share them with others. You would be amazed how many people know someone affected by Myasthenia Gravis. There’s a whole lot more people my messages should be reaching. That’s where you come in.