Crisis
 

Hi guys. Ive just got a quick ?. It has to do with crisis. To anyone here who has trouble breathing/swallowing, what does your throat feel like? I feel like I am and my throat just has a hard time contracting the muscles, and feels like my throat is constricted. What should I do?

contact your accident and emergency of the local hospital sraight away and tell them your neuro's number if you have it .ACT now!!!!

If you are having a hard time breathing get your butt to the ER.

Hey honey!
 

I have to agree with Brennan - go to the ER quick! When I was really weak swallowing, chewing and BREATHING were almost impossible.....please do NOT take chance with your health!:eek:

Once you are there you should be given some meds to help make you stronger - you'll feel GREAT after!

I'm not trying to be a downer - this disease CAN be controlled - just monitor yourself and let EVERYONE know when you are this weak!

Erin:hug:

Hey,

When I'm weak and my Bulbar symptoms kick in, I feel like my throat is swollen, or like there is something stuck in it. When I have trouble breathing, I feel like I just can't expand my lungs fully, I usually end up in my "sick position"....sitting on the couch/bed bent over with my elbows on my knees, and my hands holding my head, on my cheeks. If your having these symptoms, it could be a sign of crises, or it could be your body showing new symptoms ...I continued to develop new symptoms after I was diagnosed and started on the Mestinon...I didn't have the leg issues when I was diagnosed. I hope your feeling ok.....
Jess

Thanks for the speedy response guys.I just passed out last night, i dont even remember trying to fall asleep. I just dont knw if I was bad enough to go to the ER. I could still breathe, though it wasnt that easy, and my throat felt like it was closing/not contracting the muscles well.
At what point should I go to the ER? Im also having lots of muscle spasms.

I start my plasmapheresis on monday, and i lovvve it. It helps so much, though im worried about going into bad crisis before then.





Erin- Im sorry for everything that has happened to you recently. Im hoping your doing well now, or as good as you can. My neurologist said they are finding promising results to a cure for MG. I hope this is true for all of us.

Thanks again guys,

When should you go in? Yesterday. The basic guidelines for when someone with MG should go in, and this is from neurologists, is when you:

1. Can't swallow.
2. Can't breathe in or out well.
3. Have increased generalized weakness.
4. Any or all of the above.

You really should've gone to the ER yesterday. I know that none of us like to admit we are worse and need help. But take it from someone who knows what a crisis is like, you do NOT want to wait. I crashed so quickly that is was very scary. It is not predictable how quickly or how badly you will get.

And you can't really tell today, on T-Day of all days, how you are doing. You have to be evaluated by objective means like breathing tests, clinical exam, arterial blood gases and oximetry.

Muscle spasms are a HUGE sign that you need help. Right before my crisis, my muscles got so bad my entire mid-section spasmed, front and back. Do you still have spasms off of Mestinon? That's one thing they will try to determine, if you are having a myasthenic crisis from not enough meds or a cholinergic crisis from too many.

And when your MG is bad, you will "pass out" from being so weak. Again, very dangerous. What if you had stopped breathing while you were sleeping? In a hospital setting, they can also see what your oxygen saturation is while you are sleeping. Mine dropped to 66% during my crisis.

If you are still bad before Monday, you need to go in. Period. Please just do it. Do you live alone? Is there anyone who can be with you while you are not doing well?

MG is manageable but not when it rears its ugly head like it's doing with you right now. Not without the cavalry. So let them help you. I hope you will be okay.

Annie

Annie: Thanks for all this information.

Yet, i didnt know if it was bad enough to go to the ER, because i could still swallow, it was just harder to do it. And the breathing is always shallow for me, and the doctors know that. They always have my take a deep breathe in and count as much as a i can. Dont do that well. Though I think i might be getting closer to a bad crisis.

I was having muscle spasms in my buttox, and left shoulder.

I dont even remember lying down to go to bed, i just remember waking up at 3 AM being able to swallow somewhat normal again. So possibly i did pass out. i dont even know..

im 17 and live with my aunt and uncle who have 4 kids, so its real hard for them to be compassionate or do anything about this, they are always around their kids, or sleeping because they are tired.

I wish i could buy a pulsox to have at my house, but they are kind of expensive just to go out and buy for this.

im not on mestinon, though i did try it the other day, but i took some more this morning because my neuro had asked me to when feeling weak, and i just feel so tired, and walking up the stairs my heart beat goes fast, and my legs feel like they are going to fall off.


So i guess my main question is, even if it is difficult to swallow, but still able to should i go to the ER, or contact my neuro? My breathing is always not great. But the esphogial muscles sometimes get weak and feels hard to swallow. This morning i almost started to choke on my sandwhich.

I also feel very light headed.


Im not sure what to do.
Thanks so much.

I can understand how tough it must be in your family situation and your not wanting to add to aunt/uncles responsibilities.

However.....

The lightheadedness could easily be a lack of oxygen to the brain. The other issues with throat, shortness of breath, heavy legs....say that you are 'hitting the wall'. The fact that you are having plasmaexchange on Monday confirms that right now your body needs quite a bit of support for your MG.

I would strongly suggest that you tell aunt/uncle about your symptoms last night and your concern / confusion over the right next step. As disruptive as you feel this may be, having you go into crisis and the whole 911 scene would be far more disruptive...and dangerous.

Whatever you and family decide, you need to NOT do anything until Monday whether you are in a hospital bed or your own bed. No stair climbing, no video games, nothing except TV and Turkey dinner ...okay?

I know at 17 you are 'invinceable'....but something tells me the MG doesn't know you are 17!! And for the moment, the MG has the upper hand unfortunately.

Let us know how your plasmaexchange goes on Monday - - and please, please, please - lay low til then.

Sue

The lightheadedness isnt always there though, its more when going up the stairs, or standing for a long while.
I just feel as though im being a baby about this, and no one would believe me if i told them my throat was not working, or my lungs were stopping.

Seems as though im making a big deal out of it, when maybe it is/isnt?

Ive never been in crisis before, so i dont know how it feels, but i feel like it may be this...
what do you think?
thx

Told ya already Tyson. Get into the ER :mad:. At least they'll do an O2 saturation test on you. You're light headed when you're exercising... hmmm. could it be you're not getting the Oxygen that your body needs? You're an athlete, you should know this young fella.

Is it possible for me to go at the age of 17 by myself? I dont have anyone that could go with me..

I just dont know if im being a baby about it all, or if its happening.

I'm glad you asked this question. I've never experienced a crisis either and don't know what to expect. Since being diagnosed I've just had ocular.

I too have been dealing with some breathing issues the past few days. Swallowing and chewing are not affected. Sometimes it just seems to take an "effort" to take a deep breath. I wasn't sure what it was -- my breathing or maybe acid reflux. When I would drink milk or a glass of water I could force myself to burp and that seemed to help temporarily. My double vision has been so bad for almost 2 weeks now that I almost feel like a blind person with my husband leading me around when we're outside familiar territory. Neuro has been increasing my Prednisone by 5mg (from 0 to 10mg now) but no effect. I'm going to call first thing tomorrow morning. When I was first diagnosed back in July he started me at 40mg and it knock out the double vision and droopy eyelid the first day. Guess he didn't want to start me that high again. I'm also taking 60mg of Mestinon 3 times a day.

So far today things are good breathing-wise, but it seems to come and go. I'm not tired, no muscle weakness, just the blasted double vision.

Happy Turkey Day everybody.:grouphug:

Also, many of the times when I get up out of a chair
or while laying and then getting up I get very lightheaded as tho I am going to passout. My head gets all black. But only for a few seconds.

Im glad i can too help you with understanding this idea of crisis. I dont really understand what exactly it is. Im sorry to hear about your double vision. I cant really relate that much as i rarely get that. But i truely does suck whenever I get it.

Were somewhat in the same situation. I have never had a crisis, though i am always weak. Some days I wake up okay, but then some days, i wake up very weak and i can tell its a bad day.
Im just at a point of not knowing if im going through a crisis or not, and whether i should amke a deal of this.

I get lightheaded when getting up sometimes, my limbs are very tired, and my breathing is very shallow, i know what you mean about the shallow breath thing. Usually i take very shallow breaths, but it takes an effort to do a deep breath.

I wish i could go buy a pulsox to see my oxygen level without going to the hospital... i dont know where to go to buy one..

Im just taking it easy today, eating and sleeping. sounds like a great day...hah.

hope your doing well.

Ditto on what Brian said. Sue too. Heck, everyone really. From every single thing you are saying, you need to go in. Listen to those of us who have been on the edge of a crisis and not had one and then who have had one. Even if I don't think I'm going to go into a crisis and am having an "exacerbation," I still go in for breathing tests and to see my pulmonologist. And leave a message with my neuro.

If you are 17 and you need medical care, it doesn't matter if you "take yourself" or dial 911. They are obligated to help you, no matter what age you are!!!

If you don't have a good pulmonologist, then get one. ASAP. You can also ask that they write a prescription for an oximeter. They may not do it but you can ask. There are far less expensive ones on Amazon.com but you need to really read the reviews - and the return policies.

Every single thing you are describing is worrisome. And the fact you are lightheaded at times really worries me. It could be MG, sure. It could be other things but it doesn't "matter" because you need help to figure it out. A lack of oxygen is VERY hard on the brain and heart (and kidneys). Has anyone even checked your blood pressure lately? You can check your pulse. Does it go skyrocketing when you feel lightheaded? When the body can't get enough oxygen, the heart beats faster to attempt to get that done.

An MG crisis can come on so slowly, that you don't even realize you are getting worse. If you got weaker all of a sudden, you would notice it better, right? But every single symptom you are describing sounds like you are very close to a crisis. That's when you want to go in - BEFORE you are in a crisis. Once you are in the middle of a crisis, you not only need immediate help but it takes so much longer to recover. So it doesn't matter if you don't know what one is like. You know that the symptoms you are having right now are EXTREME and you need help.

I'm sorry you don't have the support you truly deserve. That's rough. But since they have taken on the responsibility of housing you, they need to step it up and take better care.

Why aren't you on Mestinon? That's the very least you can do to help yourself. Talk to your neuro about dosing/frequency (how much you take at a time and how often/how many hours in between).

Don't feel stupid about going in to the ER. That's their JOB, to assess your health when you can't. Okay?!!!! Just do it. No amount of rest will help if you are headed towards a crisis. I tried before mine and it didn't work.

Let us know how you are doing.

Annie

You don't only go to an ER only when you are IN a crisis. In fact, most people who get to that point had "clues" like you are having and ignored them OR they just got that bad that quickly.

You go to an ER when you are getting worse. It's preferable that you go BEFORE you are in a crisis.

If you get worse, call your neuro. If you are as bad as you are, GO IN and the ER staff can call your neuro for you.

1st. Thank you for all of your very useful information. It truely is very valuable.

I understand your concern for me going into a crisis, i just wish i knew what it exactly felt like, here is whats happening, and could you please tell me what i should do, even though I know youve already said go to the ER. Heres whats really happening.

1. Yesterday I went to my secondary neuro at UNC- chapel hill, to get more plasmapheresis ordered. He checked me out, said i was okay. asked if i was having trouble swallowing/breathing. I said breathing, and at that point i had hardly had any swallowing troubles, maybe 2 or 3, where i have to focus very hard to get the food down my throat, like my muscles are gone. But only very rare occasions.

Then When i came home that night, around 9 oclock, swallowing my own saliva started becoming a chore, and I sort of had to focus, and felt like something was stuck in my throat, and it was a very odd feeling. My breathing was also very shallow, and i told myself i would jst go to sleep (right after I posted that last post on here) and so i sat on my bed, to get my cloths off, then when i woke up at 3 am, i was laying on my bed, with no recollection of how i fell asleep, so i am assuming i passed out in a way.

Today, i woke up at 9, was dizzy when getting out of bed, went and got breakfast, coming up the stairs my legs started to hurt, or be very tired, and my heart was racing quite well.

and Being thanksgiving day i wanted to be downstairs with family, though i had to come up and just got up from a 3 hour nap, and a few minutes ago when eating chicken, not able to stand very long, i sat down, took a bite and almost started to choke on it. but i forcred it down.

But right, now, i feel fine. Just tired, but not really shallow breathing, no dizzyness, though i am lying down.

Throughout the past week ive felt pretty well, and been able to go up the stairs well, and everything, do yoga.

i guess im just stressing that sometimes, im GREAT, then horrible and feel like jello.

Is that a sign of a crisis upcoming?


Thanks for all your awesome help.

I have tried mestinon, though it only makes me worse. My neuro said it works on some people and then doesnt work on some others. I tried the highest dose the other day, and collapsed onto my bed, and slept for 14 hours. It made me much more tired..

thanks again for caring and giving me valuable info.

;) It can take awhile to figure all this out!!!

First, You should not go directly to a "high" dose with Mestinon. Since you are being seen at UNC, I'm shocked they didn't go over this with you. You should start at lower doses, like 30 mg. and SLOWLY work your way up. You can get weaker with too much Mestinon. So that may be why you think it's making you worse. More is not better with Mestinon. It's a balance between amount and how many times a day AND when you take what amount (i.e., like more when you are out doing things or later in the day when you get worse). A steady dose throughout the day is best. My neuro, who is amazing, says to only take 10 mg. more when out. It might be more than that with you. You should discuss this specifically with your neuro, and work out a sensible dosing schedule.

Neurologists do neurology. Pulmonologists do pulmonology. ;) That may sound simple but many MG patients still do not go see a pulmonologist when their breathing is worse. Pulmonologists are the only ones who can assess your breathing!!! They can do specific breathing tests (MIP and MEP) that can show how bad you are. If bad enough, they can do an arterial blood gas. And oximetry. When you have a crisis, it's both pulmonology and neurology who handle it. You can't tell by looking at an MG patient - which is what your neuro did - to see if they are breathing well or not.

The most telling thing with your symptoms right now is how QUICKLY you go from okay to bad. That's a HUGE warning sign.

Let's say the scale of MG is from 1 to 10 (are any of you at a zero?!!), 10 being a crisis. And it's not a slowly getting worse scale, it's more like a Richter scale (earthquakes), where things get exponentially worse the higher you go. Okay?

When I'm doing okay, I won't go from 2 to 8, for example. I may go from 2 to 4 or 5. Then, when I rest, I go back to 2 or 3 but it can take a day or two.

You sound like you are going from 4 to 8, verging on a 9!!! That's why you need help. Because you don't really know when 8 will turn into 10. The fact that you're napping so long tells me your body is putting you to sleep because it needs to rest so badly. Not from being tired but from weakness.

I know you like to stay fit but YOGA right now?!!! That's simply silly. Yoga takes sustained poses, which can make MG much worse. You need to stop that until next Monday, okay?

Finally, yeah, a crisis is headed your way. I honestly believe that, if you don't slow down and get some real help. Don't know how many ways I can say this!! :hug: It's like you're waiting for someone to say, "Naw, you're fine." You're NOT fine.

Dr. Howard should be doing a better job than this, since he's one of the best neuros around!!!! I don't know if you've seen him or if he is your neuro but this is silly. Sometimes neuros don't cover all the "what if's" or "how to's" of MG. And this is what happens. Damn.

Annie

Bravo Annie. Well said.

Tyson, please understand we're trying to help you grasp how important it is to get physician assistance now. You did this when you first had your thymectomy too .... you are looking hard for someone to tell you it is OK for you to push yourself but given what you've told us about yourself it is NOT. You are going to crash and crash hard. Honestly, this is from someone who ignored the signs a bit more than a year ago and landed in hospital for a month. It is new to you, it was new to me two years ago now. I'm *significantly* better now but it took a lot of learning and getting used to my body again. A lot of acceptance of new limitations.

A month in hospital is not worth the "awww, I'm being a wimp and it isn't really that bad". I've paid that price and hope you won't have to because I don't want to see anybody to have to.

Yes I understand you guys are trying to help, and i love that.
Im getting closer to going to the ER, trust me, i just want to make one more thing clear, RIGHT NOW, im fine. Im sitting in bed, my breathing is hardly shallow, its like usual. But when going up the stairs, my pulse did start going faster.

So even though i feel okay while sitting in bed, and am able to go up the stairs without having to stop or anything, i should still go?

I know im being stubborn, but i havent learned the hardway yet, and thats how i learn.

Thanks, Brian. But I prefer "brava!" ;) Or bravi, since the entire group here is so awesome.

Learning the hard way, eh? Do you want to be dead just to prove that?

If you are sitting around and are "ok," then you can sit around. If you start to move around a "little" and begin to tank, that's exactly the time you seek out help. You don't wait until you fall over or fall asleep or can't talk or swallow or breathe or move to seek out help!!!

Geez, Tyson, you're wearing me out here. :eek:

Annie

Hi Tyson

I'd have to agree with Annie, waiting til its really bad is a bad idea. Its better to get help sooner rather than later. I've been there done that, not with a serious crisis, but mainly with double vision, if I'd talked to my neuro straight away, I probably could have gotten away with a simpel treatment rather than bumping my meds waaay up.

I know it must be hard for you, I really sympathize, you really need to look after youself, it so hard with this disease, it sucks!!!! I'm still learning stuff after nearly 7 years, I guess cos I really would rather it just went away, still waiting, and it hasn't gone yet.
take care
Kate

LOL, sorry, never learned Italian...

Brava Annie.
Bravi NeuroTalk

Go the H. E. double two-sticks to the ER Tyson. Tell them what has been happening to you. The worse you can do is give them an easy case for the afternoon/evening man.

Okay okay. So I'm
at the er. Waiting for the neurologist to come. My pulsox is 95.

Happy?;) thanks you guys

Yes. Thank you Tyson. I'd hate to see a young fella like you kill himself over being afraid to look like a wimp. BTW, at 94, they wouldn't let me leave the hospital when I was in the same situation. O2 sats fall on a logarithmic scale (i.e. really flippin' fast).

Yes I'm happy to Tyson!!!

Me too, Tyson!!!! 95 sitting around can tank to a lot less moving. They should test it while you move around!

I hope they take this seriously. Sometimes ER docs tend to pooh-pooh what they don't "get."

Let us know how it goes. I hope they do breathing tests and arterial blood gases.

Annie

Love the "Thanksgiving Day Neurotalk Tag Team!" :yahoo:

They have done a lung test, but no arterial blood
gas. Should I
ask?

Blood pressure was 151/49.

They are keeping me over night and maybe starting plasmapheresis in the morning.they said I wasn't at crisis, yet at exaturbation.

Thank you guys for helping me realize. I'm at duke, in very good hands.

CRISIS THE OTHER NIGHT
As Annie and others have said and takeit from someone who aonly at 58 has realised it ,as such a young age everthing that feels wrong is wrong with mg .better sorry for a mistaken sysmtom than seriously dead from a real one

Well, they probably should've done the blood gas to see how things are, yes.

I'm glad you are getting help!!!!

That blood pressure is really high. Have they done an ECG? If not, they should've done that too. Especially considering that you've been dizzy.

Hey all. So is it normal to
feel better from an exasturbation in the morning? I feel quite alright right now, but they are transferring me to unc, but I don't know what for...since I feel
better and the only problem is swallowing. And at that it isn't very bad. I'm
just tired. I don't really know what is going to happen at unc that hasn't here, but my blood pressure went down to 124/61.

My pulsox
is 99. And my heart rate spikes when I sit up from laying down, or stand up.

Thanks again..

Hi there!

Glad you are feeling better!....but, as you know, your condition has not been stable over the last few days. So, yes, it is not surprising that you feel good right now. And also would not be surprising if you were in trouble again 3 hours from now!!

Decide ahead of time how much you want to learn about your condition and then learn. Ask questions of the medical staff, of folks here, and do some research on the internet yourself about MG and any other medical term they come up with.

Unfortuantely, MG is not an 'infection' - something that gets cured within a short period of time and the body moves on. What you (and all the rest of us here) have is more like a condition. We must each learn how to manage our medical condition - cuz like it or not, each one of us is effected by MG to a different degree on any given day. And we each respond to medications / treatments differently.

Once you have MG; you must learn how to manage it for your body. What works for you may or may not work for someone else. And how your body tells you its about to flip out will undoubtedly differ from the way mine tells me. Like Brennan said, 'Quit with the denial.'

You are a smart, terrific person - who happens to have had their life turned upside down by MG (for the moment). But thinking that you can go back to yoga and running and other physical activities is not your reality right now. And everyone here worries that if you keep pushing it, you could risk a serious, crisis that comes on too fast for you to react to.

We like you too much for that to happen!! I'll get off my soapbox now....be a good patient and learn as much as you can!!

Sue

very well said,
 

I think also that one of the problems with this illness, is this nature of coming and going, and making you ask yourself sometimes, if you may just be making "much ado about nothing".

we each can have reasons why we feel uncomfortable about asking for medical help, when we are not sure that we really need it, and maybe things will just get better on their own.

I know for instance that in retrospect there were times when I dangerously ignored my symptoms and kept on with my life "as usual" , because as a physician I felt uncomfortable bothering my colleagues needlessly.

it is true that there are many times when you can "get away with it" and gradually recover on your own, but there are times when you don't and in the early days of your illness, you don't know how to safely recognize and know the true severity of your symptoms. when it's OK to do what ever you want, when it's time to just rest for a few hours, when it's time to take "time off", and when it's time to ask for professional help.

all this together can make you feel very helpless and lost.
with time you learn, and each of us has his/her own learning curve.

its good to have a good neurologist familiar with the ups and downs of this illness, as well as "experienced" patients to guide you. even though as you say, each has to find what works best for them.

alice