MG Hit hard today
 

I did some running around town today. First I dropped my Grandchildren off at school. Then I went to the library. After that I went to do some Christmas shopping at a book store, but that was all I could do. I felt the weakness come on strong and even though I needed to go to another store, I chose to go home and rest. Later in the afternoon I felt good enough to cook dinner, but after eating I started feeling really weak. My face felt really weird, I could hardly hold my head up, and when I tried to speak to my family, my words slurred. I couldn't seem to form the words right - I think my tongue was weak. I felt like I needed a neck brace to hold my head up, and my mouth was kind of hanging. My arms felt heavy, I shuffled my feet instead of picking them up, I kept feeling like my stomach wasn't digesting right - it felt like if I burped it would bring up acid, and my breathing was getting labored. I made some caffeinated tea and it helped and my breathing is much better right now. I need to realize that even though I'm taking Mestinon, that I shouldn't over-work myself. I tend to push myself too far and I don't really know my limitations. It seems that I don't know when to stop...

You gotta lay down and rest immediately when you get that way. It may take a couple of days of rest to get over it. Are you ok now?

I remember once being determined to stand in a queue for an irresistable half price bargain at a clothes store.
There were only about 8 total in the line.
But by the time there were only two left in front of me I had already left it too late and knew it.
The trunk muscles were about to reach their myasthenic dissolving point in just a few seconds :thud:
It was either immediately laying down on the shop floor in front of all the customers, or sprawling myself stomach first over the nearest table of new arrivals and hope that no one in that store that saw me in such a ridiculous position actually knew who I was or would ever see me again.

Then I knew I was pushing my luck.

There have been times when I didn´t know like 3 years ago starting up gentle breast stroke swimming when I thought my M.E was better (max 1 length and max once a week) and the effects of that was a whole month of payback time very specifically in all the muscles that had been used for swimming (so, a lot of muscles and a lot of payback time!)

Since then I practiced and practiced knowing when to stop and ended up feeling like I went through quite a long period where´stopping/slowing down´went into automatic mode and I was doing so well that I didn´t have to think about it any more. But then when symptoms start spreading, change in intensity, or payback time becomes unpredictable it´s not that easy is it?! When you think what you´re up against you probably are doing a good job more often than you are doing a bad one.....


Good luck with doing even less even during times you can do more :)

I wonder if there is anyone who isn´t guilty of not knowing when to stop sometimes ;)


Anacrusis :santa:

Alice's phases of knowing when to stop.

Phase I: You have no idea what is going on and suddenly finding yourself unable to walk/talk/move etc. with no warning that this is going to happen.

Phase II: you gradually realize that there is some vague connection between what you do and those unpredictable episodes.

Phase III: you learn to recognize early subtle warning signs and learn to stop on time, although you are not a pro and have a lot of times in which you do more than you should or stop when you could still do more.

Phase IV: It becomes second nature for you to stop on time, so you have only rare times in which you crash unpredictably, but you feel that you could do more.

Phase V: you become tired of always monitoring yourself and you push yourself more than you should, even though you know there is going to be a price. The price is many times unpredictable.

Phase VI: you can almost always predict the price you will pay for what you do. You choose what is important enough and what is not. You probably have the optimal control over this "crazy" illness.

I just woke up around 9:30 Arizona time. My breathing is a lot better. My face or, I should say under my chin, still feels strange. I looked up the anatomy of the tongue and I think it's the geniohyoid or genioglossus part of the tongue as well as the tongue inside my mouth or maybe those two parts affect the tongue inside my mouth, I don't know. I'm having double vision too now, but I'm going to take it easy today. I have all over weakness too but not as bad as yesterday. I'm going to Southern California tomorrow to see family, so I better rest up. I'll be out of town for about a week and I'm usually drained every time I go.

Alice

Are you at phase vi and how did it take you to get to that point?

Quandry, When weakness comes on that strongly, you're in trouble. Like Celeste said, it's time to lie down and stop moving. No talking either.

You need to call your neuro and say what happened. They might want to see you!

If it were me and I had that kind of sudden weakness, it would've been a 911 call. I'm not even exaggerating! With MG, you don't know how quickly or how badly it will get. And, not to scare you, but many "1st year MGers" go into a crisis because they either push too far, don't have enough medications or don't understand that this disease can knock you on your derriere! :cool:

Do you have a cell phone for your trip? Is someone going with you? Really, a trip after such extreme weakness is so not a good idea. I hope you'll be okay. Make sure you make your family aware of how badly you're doing, ok? Call your neuro before you go.

Alice, I think I'm in Phase X: Nope, not going to do that because I avoid hospitals like the plague.

Steph, Sometimes you only get to that point after you've had an MG crisis. It's so damn scary that there is NO WAY you'd ever want to relive it.

Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me. ;)

Annie

Annie, I've gone to ER in this town before and didn't get help, and then they shipped me off for a two hour ride in an ambulance to another place that didn't help - it's frustrating. I am, however, guilty of brushing off my symptoms a lot of times and maybe I should get over my fear of hospital inabilities now that I can at least ask them to do an arterial blood gas on me instead of checking my oxygen with one of those finger thingies - something I learned from this site.

I think I've had MG for at least ten years, but now I'm questioning whether I've had it even longer maybe even into childhood even though I've only recently been diagnosed. It's just getting worse now that I'm getting older and now that a doctor finally placed me on Mestinon I feel like I can do much more, and this is why I haven't yet adjusted to knowing my limitations while on Mestinon.

I have a cell phone and I'm traveling with my daughter and she or her husband will be driving. I can relax on the way there, and the rest of my family is aware of my condition. I rested all day today and now we'll be leaving on Saturday instead, so I'll get another day of rest.

I think that just because a disease is unpredictable doesn´t mean that we shouldn´t look for predictable patterns - just not be swept away by them
and think that we have reached final static answers. What has kept me absolutely sane during these last few years is finding those small pockets of predictability during unpredictable periods of unpredictable myasthenic weakness! I got to really observe how my body and brain respond accordingly over time to a fluctuating invader and this is what fascinates and surprises me most :)

Anacrusis :)

IAnacrusis, Do you honestly believe that's what I was saying? Of course not. But "newbies" like Quandry are the people I normally spew that out for. Why? Because thinking you can CONTROL MG by seeing patterns is deceptive. It takes time to figure out how your own specific type of MG will respond to activity, treatments and so many other things like heat and lack of sleep.

Being honest doesn't mean I'm not being supportive. Nor does it mean that when I give an opinion that I ignore everyone else's. I can only speak from my own experiences, just as you do.

Quandry, I'm glad you are as prepared as you can be. I hope you have a great trip and holiday.

Annie

I hope I am. It took 7 years, a lot of trial and error, a lot of documenting, thinking, reading, learning; Traumatic hospitalizations and many times of near-despair.

Annie,

I am very fortunate that it is agreed by all of my current physicians (including myself) that going to the ER for me is totally useless. I have everything required at home and can call them all if I need their support or advise.

This also took many years and an almost impossible quest.

If I didn't have this privilege I would probably also be in phase X or even XI. :rolleyes:

I fully agree with that. This is why I mentioned those phases and the long time it takes to learn.

I´ll say it a different way......

I got much better at not pushing myself as hard as I used to and am actually quite proud of the overall progress I made with that process over a 3 year period. (my body was taking care of some of that with gradual adaption as if in autopilot mode)

Also, getting others to match their expectations with my own expectations of myself eventually turned into a happy development :)

You got some great advice on this thread. Wish you the best of luck with this process however you do approach it. (very carefully I hope!)

I feel I did a really good job getting better with this issue and I hope you will too :)


Anacrusis

Annie,

Thank you for your opinion.

I don´t think that seeing patterns in MG helps to control it - it just helps me understand it a little better.

Anacrusis

[QUOTE=alice md;941417]I hope I am. It took 7 years, a lot of trial and error, a lot of documenting, thinking, reading, learning; Traumatic hospitalizations and many times of near-despair.

Not less important. I reached phase III on my own, but I believe that going from there would not have been possible without my amazing neurologist.

You need to call your neuro and say what happened. They [B]might want to see you!

Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me. ;)

Annie[/QUOTE]




A couple weeks ago my daughter ( after big stress) had a very bad breathing time,did not want to tell me, and call 911.They took her to the hospital,I even not sure she could explain what was wrong with her,probably she could ( we did for her a list like ID bracelet with info).The Dr ( they now called " hospitalist") ordered Solumedrol,she did have a few breathing treatments. After that they discharged her, advised to contact her Neuro.
Two days later at night (thank God, she was with me),she started non-stop coughing,breathing treatments did not help.I knew she is getting worse,and tell her that I call 911. She said: I was there already....they did not help( ???!!).I did not listen....While ambulance approaching she said: I can't breath.....When they came, I just gave them our list,so they can do all this paper work ( I could not talk clearly.....).I was just repeating: you might not heard about it ,but this is MG,MG,MG,neurological condition.....One paramedic told me: "I know...".I ask : Do you have C-pap?- Yes,we do in the car.- Please,bring it now!!- Wait until we get to the car- Please,now! - Wait.........
In the car I was asking the same.One paramedic said to other: put C-pap, so mom shot up ( !). It helped .
In the hospital,they continue with this for about 1 or 2 hrs ( I din't know the time).her weakness became better,and breathing too. And of course,they were ready to discharge her,just said to continue Prednison Dr in first ER ordered,breathing treatment,and CALL THE DOCTOR TO MAKE APPOINTMENT.
For the next four (!)days I spoke with his nurse,she said she can not get in touch with him.Then she said to make appointment. They wanted scheduled her for January (!) So,THEY DID NOT WANT TO SEE US RIGHT AWAY.Long story short ( sorry,not too short...),she got appointment in two days.He left her on Prednison for a month.He refused to order IVIG. He NEVER heard about Mytelase .He let me know that all doctors do same thing for MG ,he did not want to do anything that they did not talk about on their conferences..( I did not asked him to...).
Well,she is better now,but she is the one who doesn't know " when to stop",she is young,and kind of "in denial".Now,I hope,she realised how bad and how quickly this could be.But...." When is When?"....
Sorry,it was very long,just wanted to vent.....

Big Thank You to all of you,who are here to share,to advice,to vent,to inform ,or just to read and " feel for".
Happy Holidays,my friends!

Marina:hug:

Hi Marina,

I am so sorry that you and your daughter had such a (needless) traumatic experience.

Non-invasive ventilation in MG when started on time can lead to dramatic improvement. This is unfortunately very poorly understood by most health professionals.

From the way you describe it, quite likely, if it weren't for your "nagging" she could have ended in the ICU on a ventilator, instead of being discharged on the same day.

Some MG patients get approval for a home respirator. This gives peace of mind, and allows occasionally pushing yourself (without ending in the hospital).

Maybe you can try and get your daughter to have a proper respiratory evaluation, including a sleep study and approval for a bipap at home.

It is quite normal for a young girl not to know when to stop. It is hard for much more experienced people. But, she should have the proper support available to her.

Thank you,thank you Alice.
I must say a 100 times more "thank you " to you,because if it's not for you ( you mentioned quite often about non- invasive respiratory support),I would never knew about it .
Yes,we have unfortunate experience with ventilator,when she was in ICU after thymectomy,for 31 days(!).
Yes,we realized.that the only way to get this kind of device is through a sleep study if she would be diagnosed with "Sleep Apnea".
So,we ask Dr to order it ,and she is going to do this in January.She did have breathing tests done a month ago,before all this happened,and she said it was good .I don't have a copy of this ( my daughter doesn't want me " to control" her,but she is not good in keeping track of those things). It's always surprises me,because she is very bright and intellligent in everything she does, but when it comes to her disease....
Anyway,thanks again for your support and your quick response.
All the best.:hug:

Being a newbie, I am looking for ways to CONTROL MG. And just when I think I have it figured out...Boom something new and more severe arises. I was under the belief that once I started treatment I wold stop getting worse. I believed that once I was on prednisone I would start getting better and thought I would be in remission by now. I think I have been in denial and I am very stubborn. I hate asking for help, I hate not doing what I want to do when I want to do it. This has caused me to be angry and sad:( I keep hoping that the Dr. is wrong and I don't really have MG and life will go back to normal.

Me too.....................

I have read in multiple sources that it can take 12 to 18 or even 24 months to get stabilized which i think means to not getting any worse as opposed to what i used to think of as the result of treatment (cured, gone, no more symptoms as in i have infection i take medication and the. I have no more infection).

Any opinions as to whether or not that is the same 2 year window during which literature says MG usually gets to its worst?

I have been diagnosed for about a year but I have had the problem to some degree for 2 years. I hope that it won't get worse. I would like to hear people's opinion on that as well. I usually can get by; I am not sure how I can get a lot worse and still work.

Celeste
 

I have read several places, that usually your worst problems with MG are in the first 3 o4r 4 years. I certainly hope that is correct, because my symptoms, at this point are not too bad. However, I dont think that is set in stone. I had problems with speech, chewing, and eyes dropping. Mestinon has mostly controlled all of that. I am having some eye problems right now, but I think that is related to cedar allergies that San Antonio, tx. has this time of the year. Cedar affectes everyones eyes to some degree.
I was like you, diagnosed about 7 mos ago, but have had it for about 3-4 years. Just no one could find it.
Best of luck and hope it doesn't get worse.

FREDH

Celeste, fred

Doyou think your symptoms have been same severity since onset pre-diagnosis or do you think your symptoms have gotten worse since time you think of as when symptoms started?

Some of my symptoms are similar. The eyes may be a bit worse.

I actually think that my leg weakness is better.

I was falling frequently. I fell down a flight of stairs in Macon and ended up in the ER about 1 1/2 years ago. I just could not figure out why I fell. I was just walking along, and then I was flying down the stairs. The ER doctor was trying to be accusatory toward my husband which was WAY off base.

I didn't notice the leg weakness until I hit the dirt. I would be walking along happily and then I would be down. That does not happen any more. The mestinon most likely helps. I also pay attention to my legs if they feel weird now.

Overall, I don't think I am really getting worse now. At least I hope not.