[Craig]

Myasthenia is considered to be an incurable, progressive (but highly variable) condition.  One of the often quoted lines is “most people live mostly normal lives”, which sounds great but covers everything from “take your mestinon and go about your life as normal” to “you were able to shower and dress yourself today like most people, even if you had to rest after that”.   It’s incredibly variable but with modern treatments like immunosuppressants and mestinon/pyridostigmine most people do really well.   There is some identified time period – I think 2 years – where if it stays only affecting your vision it is extremely likely to stay just there and not progress to generalized MG.

I have seen the same or similar comments about disease severity that you mention, that the first two or first 5 years are the worst.  I think there are two parts to this – my own experience was like yours, started with double vision but I very quickly ended up in the emergency room with trouble swallowing and a whole bunch of other issues.  Some people progress very quickly at the beginning and many of the treatments take some time to take effect. The second part of that first couple years is the mental adjustment to new limitations – “I can’t drive today, the double vision is really bad.  I’ll try tomorrow”.

The time between flare ups – and even what you consider a flare up – is very different and I think hard to predict.  Some people are very affected by stress, some people may have flare ups if they catch a cold or get sick, some people just seem to get them from time to time with no clear root cause.  You may be able to push down a flare up by increasing your mestinon or your doctor may change up your immunosuppressants.  Unfortunately there isn’t one clear answer, that’s something you’ll figure out in partnership with your neurologist or doctor over time.

A lot of people do benefit from changes in lifestyle.  Many of the doctors seem to recommend Mediterranean-type diets and they all encourage regular exercise and stress management.

I think you’ll develop a sense over time that it’s time to hop on the mestinon or take a little extra. My first experience with MG-related double-vision was at highway speeds at rush hour coming into the sun after going under an overpass so I didn’t have any warning of my first experience either.  A couple years into it, I have a pretty good idea if I missed a dose or if I should be thinking about taking some more now.  I’d say watch for blurriness first – that’s likely to be right on the edge of where you brain can keep a single focused image.  As time passes or if you put your eyes under strain (in and out of the light, extended reading, etc), that’s the point where I start to push into double vision.   Also, once your MG is controlled if you still have double vision then there are things your opthamologist can do with prisms in your glasses to correct it.  You’re very lucky to have an eye doctor who knows about MG, hang on to them!

If they do find they need to take out your thymus, some people experience essentially full remission once that’s taken out.  It can take up to a year once it’s taken out, and it’s not guaranteed (it didn’t help me) but as I remember it, if it has to be done, it has the best impact in cases like yours where it’s early and mild.

Best of luck with your doctor visits!

[Craig]

My situation is similar to Kelley’s, all my friends and family know though it took some time for the word to get around and, because I “don’t look sick” I sometimes have to remind them.  For strangers I don’t tell them anything unless I need to, but I give them (and friends and family) a solution right away if there’s something I can’t do – “You folks go up the stairs ahead of me, I have a medical condition that will make me very slow on the steps.  I’ll see you up there!”

[Craig]

I have decided that I’m not going to let most of it affect me.  I can’t control what other people do so, like I did during flu season before Covid, I manage my own risk.  The numbers and messaging from governments are a mess (“in the hospital because of covid, or admitted to the hospital from a car crash and tested positive for covid?”, “wear any mask.  Cloth masks are just facial decorations.  Only N95 masks do anything.”), I don’t understand the math well enough to judge for myself whether the headlines match the actual study results (“vaccines essentially stopped being effective with the Delta variant”, “vaccinated people shed less/the same/more virus compared to unvaccinated people”, “natural immunity is 6x better/6x less effective than the vaccines over some meaningless short period of time”)   I know double-vaxxed-and-boosted people who work from home, don’t go out to eat or party, and have no kids who had covid and unvaccinated people with young kids in school and sports who have not.

I decided to control what I can control.  I stock some extra supplies in the house so I don’t have to run to the store as often as I did 3 years ago, if the store is more crowded than I like that day I don’t have to go in.  I attend meetings online whenever I can.  But Covid is not going away, and – just like the flu – there’s always going to be another variant, so I am cautiously expanding my circle of activities.

I live in a US state with a lot of mandates including “vaccine passports” in some cities but I have pretty much decided that I’m going to start treating it like a bad flu season. At this point I have the rest of my life to get on living, and I don’t have time to be in a constant state of panic about things I can’t control.   If I wasn’t panicked about dying from the flu 3 years ago, why should I be panicked about Covid at this point?  I pay attention to the information put out by my local Board of Health and manage my own behavior – getting my own vaccinations, deciding when to wear a mask and how many people I’m comfortable being around in a particular situation, watching my diet and trying to get my weight down.

 

[Craig]

This is a near-zero-effort meal in prep and cleanup that I like if I need a break – black bean burritos. There’s a surprising amount of flavor for how little goes into it, and if you care about those things it’s vegetarian, relatively high in fiber & low in carbs.

ingredients

1 cup canned black beans, rinsed and drained

3 Tbsp grated Parmesan cheese

Tortillas or high-fiber sandwich wraps

Salsa

Sour cream or plain greek yogurt

Shredded lettuce

Hot sauce, if desired

1. Place the beans and parmesan cheese in a microwave-safe bowl and microwave until warm, about 1 minute.  Cover the tortillas with a damp paper towel and microwave to warm them, 30 seconds to 1 minute.

2. Divide fillings across tortillas. roll them tightly.  If you’re making multiple small wraps, roll them up in aluminum foil to help keep them warm and keep all the fillings in.

So basically, microwave the beans and cheese together and put that mix on tortillas with topping of your choice – hot sauce, salsa, sour cream, etc.  The parmesan cheese sets up like cement in the bowl after it gets heated so avoid a bowl with ridges on the inside for easier cleanup.

 

You can do it like a taco bowl too, if you’re using bigger tortillas or wraps.  Heat the wrap, put it in bowl, dump in the shredded lettuce, the heated bean & cheese mix and top it with the toppings.

 

 

[Craig]

My neurologist only recognizes voluntary muscles weakness as due to MG, and has even said “that’s not MG-related” a couple times (to which my response was “well I never had that problem before you started treating me”, and that allowed us to have a little reset in the issues they would address, especially if those things were caused by the treatments).

I have been recommending this video all over the place, the US Myasthenia Gravis Foundation sponsored a webcast called “Managing Teriary and Secondary Symptoms of MG”.  I have found this to be to the most affirming thing I have seen in a long time.   This link will start the YouTube recording of the webinar at the part where he talks about pain and MG\, I encourage you to check it out.

[Craig]

I have built up a small inventory of all my MG medicines (maybe 30 days) by filling them promptly even if I have missed doses over time or taking advantage of dosage changes.  There’s a card with an up-to-date list of my prescriptions, pharmacy, and doctors that I verify at the beginning of every month. I have some chemical cold packs (similar to these), in hot weather I could place them on my neck or under my arms to help cool down without needing refrigeration or running water.  My glasses need prisms so I have a spare set of eyeglasses in my kit.  I have a couple types of small water filters and purification tablets to cover a few days in case I’m not able to displace to a managed evacuation area.

[Craig]

I think they’ll find more ways to bring more people to or near remission – few to no symptoms with minimal medications.   The research and clinical trials are really exciting and hopeful, they’re learning so much about different underlying characteristics of the disease, and are converting that into actual clinical trials.  If you look at the pace of progress over the last 5-10 years – creation of an international standard-of-care, approval of a complement inhibitor, the identification of the LRP4 subtype & development of potential treatments for that, understanding that Rituxan often works better for MuSK MG than achr, and so much more – it’s incredible for such a rare condition.  Clinical trials are now including MuSK and seronegative patients – there’s so much good stuff.

I don’t think they’ll find a single cure, but I think they’ll find ways to better target specific treatments, and that combined with new upcoming treatments will help an awful lot of people!

 

[Craig]

Scott McCormack raises a great point, that is also my experience.  My wife is more afraid of catching covid (or the flu, or anything) and bringing it home than I am afraid it myself.   (I’m cautious but not afraid)

“If you go out and catch something and die, it’s your fault – you didn’t wear your mask properly, didn’t wash your hands enough, didn’t social distance when you should have.  If I go out and catch something, bring it home and you die then I’ll have to live with that”.

I think it’s an excuse to make me do all the grocery shopping but at least I get to select the junk food.  🙂

 

[Craig]

I don’t feel like I have experienced additional stress, everyone has been trying to figure out what is right for them.  I made the determination I was going to do what is right for me at any given time and just assume that others are doing what they feel is right for them.  I guess any additional stress would have been in that I need to have a heightened level of awareness and caution compared to many other people but I don’t let their decisions affect me in that way.

I have very healthy friends who are not going to get the covid vaccines at this time, some of them have received quite a lot of different vaccines over the years through their military service or because of overseas travel and experienced significant side effects from those.  They’re not interested in receiving these vaccines until they feel more comfortable with the information that’s available about them. Because of their decisions, I don’t hang out indoors with them for any period of time but we’ll still pull up chairs outside and hang out.

I feel like a key thing is in how we choose to respond to situations.  My healthy wife gets very stressed if she feels like someone doesn’t give her enough space in a store but she responds to that situation differently than I do.  (Picture this at the meat counter in a supermarket, where maybe you’re trying to judge freshness and select a particular size package and it can take a couple minutes to make a selection) I just move away from that person and do the rest of my shopping and come back to that item when the person has moved on, while my wife will stand there and try to continue to shop while worrying about the person standing next to her.  She finds shopping to be much more stressful than I do but I see that as a result of her choice to respond in that way.

 

 

[Craig]

I knelt down to introduce a small child to my small dog and fell over when I tried to stand up – I hadn’t realized the muscles were working to hold that particular position and there was just nothing there when I tried to stand up after several minutes.  It scared the child’s parents pretty badly, it went from “oops!” when I fell over to almost a panic when I couldn’t stand up at first.  I felt pretty silly for falling over as a grown man, and awful for how worried they were.

I got to use that story when I saw a frail, elderly lady trip on the sidewalk and take a pretty nasty tumble – she was embarrassed and a little scraped up, telling her my story distracted her while her friend went to get their car to take her home to clean up.   By the time she left we were joking about making plans to buy kneepads and helmets together, very much a “it happens, we felt ridiculous, let’s laugh about it and move on” moment

[Craig]

I find that both mestinon and pednisone contribute to leg cramps. I know that if I take more than 3x 60mg mestinon in a day that my toes and calves are going to cramp up when I lay down, and the higher my prednisone dose it the worse the cramps are. I don’t really like the taste of Gatorade but find that a small bottle daily helps, as does looking for foods that are high in potassium (baked potato, baked sweet potato, spinach, bananas, etc) I think those are all unscientific treatments for leg cramps but they have helped me.

[Craig]

Margeurite, this a great point:

I said no more interns trying , I wanted the most experience person in thes hospital, probably for Pediatrics and a Pedi tube. Shocked, they complied. It was done in 5 minutes. “

I went through a similar thing when I was on Soliris and developed meningitis-like symptoms.  They did a spinal tap, and by “they” I mean a med student did their first one on me.  They got it done right as I was hurting my limit so it worked out, but it’s okay to speak up

 

 

[Craig]

If you’re able to eat & drink, order an extra drink or two with your meal. Having that extra orange juice or apple juice on the table is handy at 3:00pm when the nurse shift is changing and they’re all busy, or at 11:30pm when everything is closed, or if you dinner gets delivered to someone else.  Getting your hands on a package or two of crackers, cookies, a fruit cup, etc makes a handy snack.

Try to go with the flow.  Your scheduled MRI might not happen because someone more sick than you needs it.  My thymectomy got postponed a week even though I was on the gurney, premedicated in the pre-op area because someone came in through the emergency department who needed the surgical robot more than I did.  Keep in mind that the sickest person goes first in a hospital; if you’re not first that’s actually a good thing.

Try to nap in the afternoon and go to sleep early at night if you can (actually sleep any chance you get)

– they’ll come by to take vital signs every few hours – midnight, 4am, etc.

– if they want bloodwork they’ll come for that at like 4 or 5 am so the results can be back when the doctors start rounds

If it’s a teaching hospital, you’ll see a lot of medical students who are getting what might be their only look at a myasthenia patient in their careers.  You can say no, but if you can do the muscle tests and the eye ice pack test and etc for them it might help them diagnose someone else down the road.

 

[Craig]

The hospital works on shifts, typically 7am-3pm, 3pm-11pm, 11pm-7:00am.   Things kind of stop at the shift changes while the nurses and doctors hand off to the next shift.  Most stuff happens in that 7-3 shift.   Activity ramps up at 4-5am as they get things ready, 7-3 is the busiest time, and then things start to slow down after 3:00pm – the nurses will still come by and check on you, you might get CTs or MRIs but a lot of the testing and even treatment functions (plasmapheresis, EMG testing, breathing tests) were all primarily first-shift activities.

[Craig]

Congrats on your thymectomy! 😉  I hope your recovery is going well and that it makes a difference for you!

I have a harder time cleaning specialized tools like dicers and food processors so I tend to stick with the one knife that fits really well in my hand and has a nice grip.  I am also a proponent of the “let it soak for a while” school of cleanup, as well as “the dogs can pre-rinse this bowl I think” method!

When I saw the forecast for the heatwave coming in this week I made a big batch of egg salad and a big batch of elbow pasta/tuna fish with some onions, celery and mayo.  I have successfully avoided cooking for the last couple days while having snacks of canned fruit, or the leftover celery with salsa, or with peanut butter.  Zero effort stuff, but as soon as the heat breaks I need to get some more veggies in that mix.

 

[Craig]

Reading can be tough for me because my eyes are heavily impacted, but I subscribe to some podcasts so I can sit down and close my eyes for a little while.

[Craig]

I find it does help to take advantage of good days to do this kind of thing – being able to pull a portion of chili or lasagna or soup out of the freezer and plop it in the microwave or a pan is a huge win on a on days where fresh food prep is too much.   Depending on the recipe (and the look & cost of the vegetables)  I might buy the pre-chopped veggies at the store instead of doing the chopping myself.  Taking out some of the prep work lets me upgrade to a more complex or interesting recipe without increasing my time in the kitchen, or makes the easy recipes even easier.

I also have a couple near-zero effort recipes I keep handy.   You can make a surprisingly tasty and filling snack or meal with a cup of black beans, a couple tablespoons of parmesan cheese, salsa from a jar, a little lettuce, and a pat of plain greek yogurt or sour cream.  Microwave the beans and cheese for 1 minute, throw everything on a tortilla if chewing is not an issue or over shredded lettuce if is.  One dish to clean from melting the cheese on the beans and that’s it.

[Craig]

Amy, I think it often goes like this with the multiple medications:  patients are started on prednisone because it’s fast, effective, and inexpensive.  But over time and/or at high doses it can cause a lot of other problems, like bone density loss, glaucoma, high blood pressure, and the bane of my existence, increased appetite. People on long term prednisone might be prescribed calcium and vitamin D supplements to try to offset some of the effects of the prednisone, or bactrim to prevent lung infections like mentioned in another post in this thread.

To try to reduce the predisone dose, they add “steroid sparing drugs” – immunosuppressants that work well with prednisone to produce the same effect but at lower prednisone doses.  This is where cellcept (mycophenolate), azathioprine, or methotrexate get added in to the mix.  Taking the two together lets them use less prednisone for the same result.

If the oral medications aren’t enough, a patient might be put on IV immunosupressants like Soliris or Rituxan, or on IVIG which isn’t a suppressant but something that kind of modifies the behavior of the immune system for a few weeks at a time.

I don’t know how far along that spectrum it usually takes to keep just ocular MG under control. I suspect it’s pretty variable but my guess is it’s more likely to be controlled with just the pills compared to generalized MG.  But that’s just a guess.

[Craig]

.

[Craig]

Amy, in my case my neurologist prescribed Bactrim (as I remember it) to prevent lung infections while my immune suppression (prednisone and cellcept) is above some level.  I think she said when those taper down she’ll stop that.

[Craig]

Hi Kelly, that’s the question we’re all struggling with I think – what feels safe for us at any time.  When I read your note, I think it’s probably good news that your husband has had both of the initial vaccine doses before he started the prednisone.  I think that would mean he is more likely to have developed antibodies than those of us who were on immunosuppressants when we got our vaccines.  Once he does start the prednisone he should probably be more careful than he is now.  Many of us have been told to act like we’re not vaccinated in terms of masking, distancing, hand washing, etc.      Depending on the timing of his tests, he may be able to get that 3rd shot before starting the prednisone, which in theory will give him better protection than if he he gets if afterwards.

 

best of luck getting him through the testing and into treatments.  I’m sure it’s frustrating but even prednisone has a laundry list of side effects and it’s important they check those things out.

 

 

 

[Craig]

Linda, that’s certainly something that has been an issue for many folks. I find that watching on TV “checks the box” but missing out on the community experience is a big loss.  Attending weekday services is a terrific alternative. One of the churches near me set up a weather-permitting outdoor Mass each week, another has introduced a specific “for those at risk” service where they enforce every-other-row and family-based social distancing and ask for mask wearing.  That’s working for now because the weather has cooperated and people are cooperating, respectively.  If you’re missing the community aspect of attending services, maybe talk to your priest to see if they know of anything like that at a surrounding parish as well, but I think you’re on the right track with the weekday services.