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.

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!

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

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