[Rick Federmann]

I’m 67 and was diagnosed 5 years ago. I’ve had a crisis on a couple of occasions, one which was a near-death experience. Additionally, I’ve had some experiences that created a lot of physical stress. Each time, the MG progressed so that the symptoms have stayed more pronounced. I wasn’t optimistic about the future.

I started following a plant-based diet (no meat or dairy) and now follow the guidelines of NutritionFacts.org, including which vitamins and supplements to use. Of course, I keep MG restrictions in mind, such as no magnesium, when I choose what to consume.

Result: In just 4 months I’ve lost 20 pounds, no longer need blood pressure pills and have eliminated a couple of other meds. My A1C dropped from 7.9 to 6.7 in the first 90 days, even though I now eat a lot (a lot!) more carbs. Notwithstanding MG weakness, I’m feeling pretty good.

Bottom line: Although I cannot reduce MG, I can deal with MG symptoms much better when I’m feeling better in general.

I recommend NutritionFacts.org because it’s not just another health site. It is a 100% free site (no ads) by a physician with amazing credentials. His videos are informative and entertaining.

 

[Rick Federmann]

And sometimes you get lucky.  Yesterday, I had surgery that required general anesthesia.  I cautioned the anesthesiologist that I am a myasthenic.  He replied, “No problem, so am I.”

 

[Rick Federmann]

I take Mycophenolate (CellCept) and had two Pfizer doses. I read online posts, including in this forum, that questioned whether the vaccines were able to create antibodies in the presence of CellCept.

I asked my neurologist whether I should get an antibody test. She said that the tests are mostly useful, but have some margin of error, which could send me in an erroneous direction. The real question was what would I do if the antibody test was negative? Would I trust the negative result and go unvaccinated, and be completely unprotected? Or would I understand that the test is sometimes incorrect and get vaccinated anyway, so that I don’t miss the potential opportunity to be protected?  In other words, would I ensure that I’m not protected, or take the risk that it works? Her recommendation: skip the antibody test and get the booster.

Later, I had a salmonella poisoning incident that resulted in an EMS/ER experience and a near-death myasthenic  crisis. While I was in the hospital I asked their staff neurologist the same question.  Her response was exactly the same: skip the antibody test and get the booster.

Last week, I got the booster. I rarely have reactions to vaccines, and had zero reaction to the first two Pfizer doses.  This time, I had flu-like symptoms the next day. I was genuinely happy about that! I would not have had such a strong reaction if my immune system hadn’t reacted to the stuff in the booster.  In other words, it confirmed that I do have antibodies and that they are on the job. It really boosted my confidence that I am truly vaccinated.

 

[Rick Federmann]

I have had excellent experiences having a separate primary care physician and neurologist. What makes it a seamless experience is that they are in the same major provider (UCHealth in Colorado).  The physicians work for the same employer and have shared access to my records and to each other, and I can easily see everything and communicate with them via the online portal.

 

[Rick Federmann]

I agree.  It’s like losing a leg.  The true impact reflects your ability to adjust as much as it reflects the actual disablement.  Of course, people with severe MG are at the mercy of the condition.  But the rest of us can reduce MG to being an annoying nuisance by working with it, not fighting it.

I’ve had several physicians tell me the I have significantly reduced the probability of dire consequences by maintaining a positive attitude and by not letting MG dominate my life.  It’s always there, but so am I.

 

 

[Rick Federmann]

I echo Tim Lindsey’s comment, above.  I only share info on an as-needed basis.  Most folks have a short attention span and jump to conclusions that fit what they already know, which nearly always results in erroneous assumptions.

Even my wife, who is an RN, continues to get some things wrong.  She is very supportive, but when I’m dragging she will always ask if I need a nap.  No, I don’t need a nap.  I need to sit or lay down quietly until the MG symptoms go away.  But I’m not sleepy; my muscles are fatigued.

This may seem like a nit, but when you are in your 60’s and your wife often asks if you need a nap while in the company of other people, it’s embarrassing because it portrays you as a tired old man.

 

[Rick Federmann]

When I was on Pyridostigmine (Mestinon), even a few ounces of light beer resulted in total lay-on-the-floor, can’t-speak exhaustion.

Now I am on Mycophenolate (CellCept) and I can tolerate a glass of wine.

 

[Rick Federmann]

When MG symptoms happen, I mentally step away and analyze the environmental conditions and what I was doing at the time.  This approach has been hugely beneficial.  I’ve learned exactly what I can and cannot do.  The results have been surprising.

I’ve learned that I can use my PC longer if I use the touchpad instead of a mouse (reduces repetitive arm motion).  I’ve learned that doing yard work in the direct sun for just an hour will ruin my day.  But I recently did 9 hours of work with landscaping rock and concrete pavers on a cool, overcast day, while taking a 15 minute break every hour.  I’ve learned to always keep an eye on the temperature and humidity so that I can anticipate issues and adjust my activities accordingly.  Sometimes I plan my day so that I am active in the morning and have scheduled down time in the afternoon for the subsequent punishment by MG.

My flares are caused by several conditions:

1. Humidity is by far the worst influence. Even if the temperature is low, high humidity will affect me every time.
2. Heat. I function well below 70 degrees.  I can function reasonably well at higher temperatures if the humidity is low.  High temp + high humidity = a bad day.
3. Stress. For decades I thrived in high-stress jobs. Now, I can’t even engage in minor debates without my speech failing me.
4. Repetitive motion. I can lift heavy objects, but using a computer mouse for an hour renders my arm useless.

 

 

[Rick Federmann]

I experience MG-related muscle pain, but it is not a direct symptom of MG.  Rather, it is a consequence of it.

When MG causes muscle weakness, I don’t feel pain.  I feel muscle fatigue, drop things, stumble or am surprised when I try to speak and it doesn’t work.  Often, my first indication that MG has flared up is when I get neck pain, arm pain, etc.

It seems that MG doesn’t affect all of the muscles in my arms, legs and neck, so the result is that only some of the muscles are doing all of the work.  It isn’t long before the working muscles begin complaining about being overworked.  Thus, my pain comes from the muscles that aren’t being affected by MG.

 

[Rick Federmann]

A suggestion, in case anyone finds this helpful: when I experience a severe cramp, I find that physically pushing against the cramp resolves it quickly.

For example, when my toes try to curl under my feet, I jump up and lean forward on my toes to physically push them back up.  It hurts, but the cramp goes away in a minute or two.

This technique also provides some entertainment value, when my wife is surprised to see me suddenly leap out of my chair when we’re watching TV.

 

[Rick Federmann]

I’ve been very fortunate that the two neurologists I’ve had are great people.  They are very knowledgeable about MG, take time to explain things, describe what to expect and incrementally approach treatment versus shot-gunning a broad solution. They are collaborative; our discussions are like doing a team strategy versus just giving directions.

My ophthalmologist suggested that I may have MG and recommended that I see a neurologist. Before making an appointment, I spent a few hours researching providers.  I looked for someone who specifically listed MG in their skill set, had years of experience and had positive patient ratings. I was fortunate to be in a large urban area that had a wide variety of providers. I understand that many people may not have this option.

 

[Rick Federmann]

Heat and humidity are my primary triggers.  When I was diagnosed, I lived in Austin, Texas. Austin has two seasons: warm and hot.  The humidity is so high that stepping outside can be like entering a sauna. A trip to Walmart was often enough to ruin the rest of the day.  I was effectively housebound, and still needed frequent rest.

I moved to Colorado Springs and the cooler, drier climate has made a dramatic difference.  I still experience symptoms, but they are significantly reduced.  For example, yesterday I spent 9 hours working on landscaping in my back yard.  Yes, I was later punished by MG for my misbehavior, but it is astounding that I could do that work.

I’ve discovered that humidity is a more significant factor than heat. I function better at 85 degrees + 10% humidity than I do at 60 degrees + 50% humidity.  If you are considering moving to a healthier climate, I suggest determining what actually affects you, so that research of prospective locations will be more effective.

Also, I’ve learned that drinking a glass of ice water has an immediate restorative effect when heat/humidity are affecting me.  If I’m away from home and I suddenly feel weak, getting a cold bottle of water or drinking from a fountain with refrigerated water eliminates most of the weakness long enough to finish what I’m doing. A sip doesn’t do it; I drink enough so that the volume of water acts like an internal coolant.

 

[Rick Federmann]

I sit or lay down anywhere that I can be absolutely still for a while. I picture it as quieting my nervous system so that the MG antibodies determine their job is done, high fives all around, move on to something else. And that’s how it feels.  I am totally weak for a while, then I’m suddenly fine, as if someone turned off the MG switch.

 

[Rick Federmann]

I had two incidents of tripping and falling on stairways at work.  Fortunately, I was going up the stairs in both cases and fell into the upward stairs rather than falling down the stairs.  Hard on the shins and hands, but no serious injuries. Unfortunately, in both cases my laptop PC flew up onto the stairs.

I’ve had many instances of tripping over things and catching my feet on stair steps because a foot doesn’t come up as high as I expect it to. It’s always embarrassing, but explaining it to bystanders would be impossible, so I try to be more alert for trip hazards and always have a firm grip on stairway handrails.

 

[Rick Federmann]

I took Pyridostigmine for the first couple of years after being diagnosed. My neurologist at that time (changed docs when I moved to another state) had a lot of MG experience and extensive credentials, and was great about explaining things.

He said the neuro-stimulating action of Pyridostigmine increases secretions. Thus, I should expect runny eyes, runny nose, increased salivation, a bit of throat congestion, … , generally anything that involved secretion. And all of those things happened.

A subtle effect that took me a while to figure out was sweating. Not sweating like after physical exertion, but almost unnoticeable perspiration that occurred all day.  Even in cool circumstances, I felt grungy at the end of the day and my shirt felt like it had been sweated in.  A shower each afternoon became a routine; a nuisance, but effective.

 

[Rick Federmann]

Because I test negative for MG antibodies, I was subjected to multiple lab tests and CT/MRI scans.  Without a definitive cause, things like brain cancer were considered possibilities.  Meanwhile, I spent hours doing online research, which helped me to curtail the seemingly unending testing.

When the neurologist was mostly confident that I had MG, he wanted to do an EMG test to increase his confidence level.  I had an EMG test for a previous situation and it was a very painful experience.  I asked him if the result of the EMG test, positive or negative, would change his decision to proceed with MG treatment.  “No.”

So I refused the EMG test and began taking mestinon.  The results were immediate, and it was then clear that MG was indeed to culprit.

I suggest being your own advocate.  While in the diagnosis phase, do research and understand the potential causes, available tests and potential outcomes.  Medical providers are under constant threat of employment termination, lawsuits and license suspension if they make mistakes.  They will err on the side of over-testing.  But you are in the driver’s seat regarding what you will or will not do.  And my providers have always reacted positively when I take some of the ownership of what we are doing, approaching it as a collaborative team effort.

 

[Rick Federmann]

MG has not caused me any PTSD issues, because it is just one more thing in a long history of things and is far from being the worst thing I’ve experienced.  I’ve had an interesting life, with high highs and low lows.  By middle age, I carried a crushing burden of frustration, sadness, anger and regret.  I had an equal amount of great memories, but the bad memories were what weighed me down.

Relief came from an unexpected direction.  My adult daughter asked me to share my full story with her.  So I wrote a private autobiography for her.  I anticipated it would be less than 100 pages, but each memory that I wrote down opened more memories, and those opened more, and more.  When I was approaching 500 pages I decided to stop and finish it. She was very happy to receive the book.

Surprisingly, I was also very, very happy about it.  My memories no longer burdened me.  Regrets are still regrets, but they are not daily thoughts and they do not weigh me down.  Difficult memories are now separate recollections, not a collective sack of bad stuff that I carry around on my back.  The world is now a bright, positive place.

Long-standing mental health guidance has been to write things down to get relief from problems.  I think that guidance is too simplistic.  If I had simply kept a journal, it would have been just another way to keep that stuff to myself.

Writing your experiences with the intention of sharing them with someone else is a very different activity.  You begin with rough notes for the most memorable things.  Those things lead to remembering other things.  Each thing is visited, revisited and revisited again, as you flesh out your narrative.  Then they are visited again when you proofread, adjust timelines and consider the tone.  It is work, is time consuming and can be an emotional roller coaster.

In doing this work you become your own therapist, deeply examining and reflecting on your experiences.  Just as important as the self-examination is that fact that we are a social species.  Everything we do is related to other people and isolation is a punishment.  “No one knows what it’s like, or what I’m dealing with, or how I really feel” are significant contributors to PTSD.  Writing your experiences as a story that is shared with at least one other person unlocks them from the prison of your mind.

For anyone suffering the frustrations and impacts of MG, writing your experiences and thoughts as a publication-ready story may be very beneficial.  It was life changing for me.

 

 

[Rick Federmann]

I am 65 and was diagnosed several years ago.  I routinely did home projects in hot weather, used a treadmill desk all day at work and felt there weren’t enough hours in each day to do everything I wanted to do.  MG symptoms were creeping in, but were dismissed as temporary circumstances that were easily explained.  Then I experienced the full onset of MG and everything changed.

When I learned that it was probably MG, I was very unhappy.  Physical limitations were not within my self-image.  Then I tested negative for MG antibodies and brain cancer was considered a possibility.  That was a punch to the gut.  I began getting my affairs in order and reviewing everything with my wife (I handle our budget and such) so that she would be OK if I died.

After a couple of months of lab tests, scans and clinical evaluations it was decided that MG was the problem.  I felt a great sense of relief that it was ‘only’ MG.  It’s amazing how something is bad, until you think that it’s really bad, and then find out that it’s not really that bad, but is just bad.  It makes bad feel good.

Nonetheless, MG limitations are real and it has changed how and what I do.  For example, I relocated from Texas to Colorado because the cooler, drier climate dramatically improves my ability to function.  In a recent neurology visit my doc said that she could tell I was suffering a classic MG symptom: “You’re frustrated at your limitations, aren’t you?”  Yep.

 

[Rick Federmann]

I was on mestinon for a couple of years and frequently experienced excruciating calf and toe cramps.  Rip-the-bone-off-the-flesh type cramps nearly daily.  My calves would seize up so tight they were hard as concrete.

Adding a lot of salt to my food significantly reduced the frequency and severity of the cramps.  I have hypertension, but adding salt fortunately did not increase my blood pressure.  It also helps that I love salt.

I also learned that when cramps happen, chugging a shot of pickle juice would quickly reduce or eliminate the cramps.  This is a technique used by athletes.  I bought small,  single-serving pickle juice bottles on Amazon that are formulated specifically for this purpose.  As soon as cramps began, I downed a bottle of pickle juice and the cramps disappeared within minutes.

I would like to say pickle juice is an acquired taste, but it is not.  When the cramps happened, though, I probably would have been OK with drinking cactus needles in habanero sauce if it got rid of the pain.

I’m now on CellSept, and am delighted to be rid of the many onerous side effects of mestinon.

 

[Rick Federmann]

I’m 65 years old.  Ageism has not been a concern with my health providers; they have all been excellent.  Collaborative, upbeat and well informed about MG.

In the workplace my experience was different.  I was in a global position in a large company.  After the onset of MG, I experienced issues in crowded meeting rooms that were warm and humid.  Eyelid droop, head droop, speech difficulties, etc.  I had not yet been diagnosed, was struggling to figure out what was happening and did not realize that it was apparent to other people.

My boss assumed he was seeing old-man issues.  He didn’t mention that my peers and our VP were commenting on this stuff until several months after the comments began.  I also learned that it had become an ongoing game for people to instant-message each other in meetings, guessing how long before I nodded off.  Note that I never actually nodded off.  I typically only need a few hours of sleep each night and never, ever nap during the day.

In my team, I was the most tenured and had a high-performing reputation.  Yet, no one asked me why they were now seeing these things, even though they had known me for years as an energetic team member,  They assumed it was an age thing.

When I learned about this, which was just after I was diagnosed, I felt embarrassed and was concerned about my job security in an environment where performance is everything.  I explained the MG situation to all my peers and to participants in meetings that I hosted.  It was humiliating.  I spoke directly to my VP, whose response was, “I don’t pay you to sleep in my meetings.”

I eventually got permission to work remotely because I could no longer tolerate warm meeting rooms.  Working remotely is common in that company, but there was always an undertone that I was a lesser performer because I was located nearby, yet unable to work face-to-face.  But I maintained the same performance level and aggressively sought new projects.

Then came COVID.  The company did lay-offs and, in my 23rd year with the company, having worked on hundreds of projects, I was given 3 days notice that I was being terminated.  I was the only termination on our team, was also the oldest, and the only one with a health-related disability.

I turned 65 just 6 weeks after I was terminated.  I wasn’t ready to stop working and my retirement financial plan was based on working at least a few more years.  Everyone knows that getting a new job at 65 is very difficult in a good economy and impossible in a COVID economy.  Surely they knew that this action would force me into a premature retirement.  Overnight, I went from a high-paying compensation plan to living on Social Security and savings.  It was like unexpectedly driving off a cliff.

Were age and MG the reason for the termination?  I will never know, but it certainly feels that way.

 

[Rick Federmann]

Speech difficulties have been a constant.  In my case, it is manifested as hesitancy and struggling to get the words out.  Regardless of activities, medications or dosage levels, the frequency and difficulties remain unchanged.  Typically it occurs when I’m tired or stressed, and sometimes just because of MG randomness.  I’ve learned to instantly recognize when it starts to happen, and I focus on pronouncing the words and speak more slowly.  With practice, I am now able to react quickly and people do not notice when I am experiencing speech difficulty.

 

 

[Rick Federmann]

I don’t work out, but I do work on home projects that require physical exertion.  For example, I am currently moving piles of landscaping rock, digging out a walkway and laying concrete pavers, and installing a fence gate.

When I experienced the onset of MG, I was unable to do more than an hour of physical labor without being punished for the remainder of the day.  Since then, I’ve learned techniques that allow me to work hard for hours.

• I don’t do repetitive tasks too long.  For my current project, I lift and carry rocks for 30 minutes, then take a short break, work on the fence for about 30 minutes, take a short break, shovel for a short while, take a break,  … , and continue that cycle. It seems that this approach flies under the radar, MG-wise.  I don’t do the same task long enough for MG to notice it and trigger symptoms.
• In my case, MG symptoms often follow exertion, rather than during the exertion.  So I don’t give it a chance to disrupt me.  I limit breaks to a max of 15 minutes, even when I want to take longer breaks.
• Getting hot from exertion triggers symptoms.  I’ve learned that when I start feeling hot, drinking ice water prevents or reduces MG symptoms.  My impression is that the sudden internal coolness is why this works.
• Immediately after exertion I take a shower.  It’s not the shower that helps, but rather the overall coolness when drying off.

I’ve also learned that the ice water and shower techniques are immediately restorative on days when MG randomly knocks me down.  It’s a hassle on bad-MG days to take 2-3 showers, but it sure beats feeling bad all day.

Of course, MG randomness sometimes still defeats these techniques.  But overall, they have allowed me to greatly extend my ability to engage in physical exertion.

 

[Rick Federmann]

I wear a red dog tag with a matching red wallet card. I have an additional wallet card that I printed that says to look at the info sheet in the cash pocket of my wallet. The sheet has detailed identification, contacts, physicians, cautionary drugs, etc.

I think the extra info sheet will be helpful if I have a crisis in a remote area where people may not know anything about MG. However, both times that I’ve been transported by EMS  in Colorado Springs they didn’t look any further than the dog tag. So I’m undecided if having the extra sheet may be overthinking it.

 

[Rick Federmann]

Originally, pickle juice was just the salt brine in pickle jars. It became popular as a solution for cramps. Now it is sold as a standalone product that has additional ingredients targeted at resolving exercise-related cramps.

Gatorade is targeted at exercise-related hydration needs.

To put these in perspective, I used to bicycle 15-30 miles, several times a week in the Texas heat. I drank lots of Gatorade-type drinks during and after the rides. I carried a 2.5 oz bottle of pickle juice to quickly drink when I got leg cramps.

Like the bicycling cramps, my MG cramps occurred suddenly. And, like bicycling, a quick shot of pickle juice was the fastest way to stop them. I’ve since transitioned from mestinon tp CellSept, so cramps are no longer a problem.

If you search Amazon for pickle juice you will find there are a lot of pickle juice products.