Hi Maxdown, welcome to the groupsorry to hear the troubles you having i kwo you are asking some uestions but if i may as a 12trsl od gmg, and beibg 83yrs old, you need to do few things to get yourself set for this deciving and sneaky decease
it is very important that you not jump from one thing to the next as you be turning in circle with despait of nothing
firs i would sujest that you get your self as much you can learn of mg, an what you supose to be doing for taking control of your life

also you need to have good and constant comunication with your neurologist and not holding any imfo that may help you

after reading your secription, i would very strongly that you cancel any scuba adventure untill you are full understand our desease, the lest thing that you need is have to contact the mergency due to that activity
you are in the right track with mestidone and prednisone, but you will have 3 things very important t fallow

total control of emotionts, stressect.

control of your day activities including work, dports, ect, in case of getting tired, stop, aand relaxe, if needed thake a nap, it works wonders

change you life style foods, drinks ect

a dayli walk and afternon is advisible
you will learn to control do what you enjoy even in a limited amount, you dont need a bpap unless prescribde by you neuro, and the rest unecessary,
best of luck

Andre

Thanks for the reply Andre.
I mis typed and meant to say "I have given up Scuba Diving".

I am speaking with my Neurologist weekly and have been symptom free for the most part. I am 61 years old and very active with probably 10 planned trips a year.
My questions were to prepare myself and spouse for an issue before it happens. You never know when an easy boat ride turns into something that leads to a stressful event. If I am on a boat or on a hike and lets say an hour away from the chance to get picked up by an ambulance what can I do.
I just want to be prepared.

Thanks

MD

Wow, you are a risk taker. I spent weeks on a ventilator from this disease
I won't leave the country. I am mostly concerned about the care at the hospital of the other countries. I had the best neuro in my city and wouldn't go back to him.

Max

Annkenp makes a very good point, principaly for what is going on with the pamdemic, are concern is to get pr be vaccinated 2plus 1 booster, and commun sence and logic that will take us a very long way in the right track,
all of us have opinions and they are very valid
you are 2otrs younger than me, so i can tell you at this stage life is to beautifull to risk it on this time of deseases which look like they may stay for a long period

in this word it is nothing to fear but fear itself
best of luck, enjoy you life an

Andre

Thanks for the replies, And I will be the first to admit I do not have it figured out.
But I wouldn’t call myself a Risk Taker. I am an Engineer and quite the opposite. I just will always explore every possible option and/or solution to every problem. I just want to live my life “living” and not “scared”.
I live in St. Louis MO and will be traveling mostly within the states for the time being.
We have worked most of our lives to enjoy this part of our lives where we can do the things we enjoy. Before COVID our plans were to be retired now and traveling 2 weeks a month. Now with my MG and COVID we will adjust to what we can do safely.
I do understand that my future life as I wanted it will not happen.
Our favorite things to do were Scuba Diving, Hiking and Boating.
Now we can cross off Scuba Diving and Hiking at higher elevations.
We have a lake place, and we are boating quite often.
I am talking with my Neurologist and Primary Doctor weekly and they have not put any restrictions on me except with the caveat that if I have a Myasthenia Crisis to call 911 or get to the ER immediately. As I said in an earlier post it seems I may have had 4 Crisis’s before Diagnosis which were brought on by activities which were stressful and put a lot strain on my lungs. I will avoid all those things in future wherever possible. But in all those cases sitting and relaxing brought my breathing back to acceptable. So they were not the Crisis events that many have had.
My concerns are if a Crisis happens while on a hike or in a boat not close to shore. What should my plan be? I want to be ahead of a Crisis if one happens.
Should I always have a portable BPAP machine with me?
Or is there a portable Respirator that might work?
And yes, I have read hundreds of articles about MG. The resources are unlimited.
I am just trying to figure this out. The Meds are working great with small doses (4x30mg Mestinon and 1x15mg Prednisone).
Thanks Mark

Max, because I have had 2 MG breathing crsis since being diagnosed in November, 2017, and the fact that I live in a very rural part of New York State with very few major Healthcare providers, I set up a written procedure/protocal with the local Emergency Services to get to a Medical Helecopter service for transport right in to Weill Cornell Medical Center, NYC where my Neuromuscular Specialist is located. From my experience you should call 911 when you are having serious breathing or choking issues. Don't hesitate. The last time in July, 2021 I hesitated and ended up on a ventolator for 10 days. The one thing I have learned over the last 4 years is that most regular practice Physicians and other healthcare providers (PA's, Nurse Practitioners) have had very little experience with this disease, Mst don't even know what it is. Good luck to you. You have started on a journey that will require you to do much of the planning and research in treating yourself.

Welcome! You are correct. Any breathing issues resolved only by rest are not considered an MG “Crisis.” The direct physical cause of crisis relates to the bellows like action of the diaphragm. It’s a large skeletal muscle under somewhat voluntary control. When, it’s weak from exacerbation or crisis, the lungs do not inhale or expel air efficiently. This leads to atelectasis and/or decreased oxygen, increased carbon dioxide and ph imbalance. By the time these show on a blood gas, you’re probably ready to get put on vent. My experience with “crisis” is that it’s not brought on by normal exercise. I usually have had other medical factors or a severe exacerbation not relieved by meds. It’s a hard row to hoe to find that sweet spot where you can exercise and not overdo. That differs so much from person to person.
In regard to BiPap or CPap, you really need a sleep study conducted by a pulmonologist to determine need for that. They are not used to prevent crisis but to aid breathing issues at night which may or may not be caused by MG. Yes, you may use BiPap instead of regular vent during parts of a crisis but that is not intended for home use. Settings are different. BiPap settings in hospital pretty much force you to breath with the rhythm of the machine. It’s a pretty strong force too that you can’t fight.
In a crisis, you cannot treat yourself. There is not a machine or an emergency med to stave off need to go directly to hospital.
The only device I keep on hand to help assess breathing is a pulse oximeter. Discuss your personal needs with your doc because like I said, every one of us is different.

Speechie,
Thanks for the comments. Your explanation of how a BiPap is used in hospitals was helpful.
I am not looking for something so I can treat myself. And I am not trying to get out of going to a Hospital. This is for when maybe on a hike or in a boat and something happens and I need to go to Hospital. It may be impossible for an ambulance/ and or helicopter to get to me in a reasonable amount of time. I am looking for something that another can administer while I am in transit or waiting for pick-up to buy some time until the professionals take over. I have been told CPR and Mouth-to-Mouth won't work.

Others probably need to chime in but for me mg crisis isn’t a sudden thing. I can feel it coming for a day or so before it gets that bad. Some may have sudden onset though so I can’t speak to that. In my experience crisis in not a sudden collapse of respiration. I’m not aware of anything that can be used until medical support arrives. I do usually end up on oxygen at beginning and end of crisis when in hospital so there’s another option to ask docs about. Good luck and please let’s us know if you find something that works in that situation. We’re such rare birds that information can be hard to find. I walk and sometimes hike with a buddy but only on trails close to home when I feel good.
P.S. If you’ve never had a crisis, you may never have one. Despite the way we talk about it here, crisis is not a sure bet with MG. A great percentage of those with MG never have one. It should always be kept in mind though. Since you travel a bit, I would suggest a medic alert bracelet or neck chain if you don’t have one yet. I have one I use when I travel. You’ll find that even medical professionals have limited knowledge about MG unless they’re a specialist. The more you know about your own MG affects how quickly you can get what you need.

Very good point
When I did have my crisis it started with slurred speech and trouble swallowing for days before going to hospital. Unfortunately my provider at that wasn't aware of the seriousness of the symptoms and I went downhill. and I was not experienced with those symptoms. You might have more time to get help than I thought. We all have things we are determined to live for. I hope you can find peace in reaching a good place that you can enjoy and get health needs met. A asthma inhaler has helped me a couple of times that we were never quite sure how the attacks came on. Could have been allergies to outside stuff. It does help with breathing trouble until anxiety passes. I traveled when I was younger so fortunately that isn't a high priority.

Hi Max -
I have asked the questions as you have re: ..."something that another can administer while I am in transit or waiting for pick-up to buy some time"...

My wife and I Full Timed in our 42' diesel pusher for 7 years before I was diagnosed, about 2 years ago. We were both pretty active and decided that it would be best for us to sell "Ol' Girl Too" and stay close to our Docs.

For me, Double Vision was pretty severe in the beginning and on occasion, still occurs. If I become over extended physically or emotionally stimulated my symptoms can return. DV does start without warning and some of my other symptoms, such as speech problems, make it very difficult to know when they will hit and what I might be doing, when they do hit, so I must be careful when operating equipment and stuff. Due to the rapid fatigue of my muscles, twisting wrenches and even washing the coach was out of the question.

I am hopeful that you will be able to maintain your active lifestyle, but would like to reiterate that, for me, this disease is a balance of activity and medications and I am careful to not put myself in a position that could be hazardous to myself or to others. For me, we decided to stay close to my Neuro and PCP so if I needed help it would be close by. Especially in the beginning. It may take a while to get your meds. dialed in, and during this time you might wish to stay close to him/her. A good relationship between your Drs. is important.

To answer your question, I am not aware of anything that you can carry with you to buy time until you can get to a medical facility that may or may not know anything about MG. If you are diving at 35' and the MG symptoms raise their ugly heads and you happen to be diving in the BVIs, you will be challenged to get back to the boat, then the boat ride to the Hospital/Clinic and then hope for effective treatment at the medical facility. I would play it safe for a while until you get your feet on the ground and see what happens.

I think the questions you are asking are valuable. You will find out what you can do and what you can not do.

Good luck,

Scott

PS - There are a bunch of experienced folks here that are pleased to share their experiences with you. Please feel free to ask any question(s) you may have.

Hi, Welcome!
I had CPAP machine that I used when breathing got difficult and I got panicky. I just sat down, put on the machine and in 15-30 minutes was fine. I also learned to take more Mestinon when I needed to be active. The one time I ended up in the hospital for a crisis was really not a crisis, as they just gave me more mestinon and that worked. My initial prescription of 3 per day was a joke as it took me 6 - 8 per day. Then prednisone kicked in and helped me get rid of the MG issues without much mestinon.

Good Luck
Russ

Hi Max,
I know exactaly how you feel. I have been struggling with the same for years. I live about 2 hours from any hospital so I know the feeling. After having a crisis (can't breathe enough) during the covid pandemic. I didn't want go to the hospital. I ended up using an Ambu Bag. The ones they use in ambulances. They cost about 20 $.
I use it when my diaphramm gets tired and I am able to recover, in an hour, what used to take days or weeks. The feeling of someone sitting on my chest goes away after a few minutes. Basically using my hands instead of my diaphramm. I have a Bipap (1700$) and a CPAP ($700) but they don't relax me as much as the ambu bag. Because bi/cpap machines need input (pressure+-) in order for the vaules to do there thing.
That simple thing changed my life !!!
I took the mask off the AMBU bag and added a scuba mouth piece for comfort.
Here is a link to a bag:

https://www.heartsmart.com/ambu-adult-spur-ii-adult-bvm-p?msclkid=18484fd09c9b1def9c7d2cfe023a6a2d&utm_source=bing&utm_medium=cpc&utm_campaign=(ROI)%20Shopping%20-%20Training%2FCPR%2FRescue%20Products&utm_term=4580359294444761&utm_content=Training%2FCPR%2FRescue

All bags are quite the same. As long as it is the right size. But they do differ. I was able to modify one and add a 6 ft cpap hose for use of ease.

On this one you can pop the valve off easy and put a cpap hose inbetween:

https://www.vitalitymedical.com/the-bag-ii-resuscitator.html?feed_special=bing&utm_source=bing&utm_medium=cpc&utm_campaign=**LP%20-%20Shop%20-%20%27Wound%20Care%27%20-%20(%248-%2430)&utm_term=4582214710427563&utm_content=LRM845011_ea%20%7C%20Laerdal%20The%20BAG%20II%20Resuscitator%20Large%20Adult,%20Size%205%20-%20845011%20%7C%20%2418.93


All the Best my Friend !

There is no shame in augmention, just shame in suffering.


---Olaf