Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am fresh out of the hospital after 7 more days...that makes 12 days for the month of June, ugh. There was only a week in between stays.
The picture looked very similar both times: breathing was very bad, lost ability to walk, no strength in almost all areas in a very rapid decline. Bedside breathing tests were done every 4 hours and arterial blood gases every 12 hrs, then every 4 (God help me!), then they switched to venous blood gases out of my port.
The interesting thing to note was my potassium was low, as was my sodium and my calcium. It turns out that electrolyte shifts can be particularly hard on MG.
The problem is, although the MG is WAY better from 5 more days of IVIG, the low electrolytes have not come up and I don't feel quite like myself so I am concerned I will have problems staying out of trouble. But, I am thrilled to say that I am walking again now independently as usual and my strength is back!
Anyone else dealing with electrolyte issues?
debra
The picture looked very similar both times: breathing was very bad, lost ability to walk, no strength in almost all areas in a very rapid decline. Bedside breathing tests were done every 4 hours and arterial blood gases every 12 hrs, then every 4 (God help me!), then they switched to venous blood gases out of my port.
The interesting thing to note was my potassium was low, as was my sodium and my calcium. It turns out that electrolyte shifts can be particularly hard on MG.
The problem is, although the MG is WAY better from 5 more days of IVIG, the low electrolytes have not come up and I don't feel quite like myself so I am concerned I will have problems staying out of trouble. But, I am thrilled to say that I am walking again now independently as usual and my strength is back!
Anyone else dealing with electrolyte issues?
debra
Glad you are home. Hope you are able to stay out of the hospital and continue to improve.
I had my first MG crisis back in May. I was very dehydrated, lost 20 lbs before and during hospital stay, low sodium, and hyponatremia.
I am scheduled for upper and lower GI test next week because I still continue to have electrolyte issues and no doctor has been able to say what is underlining cause.
Wishing you the best.
Bruce
Glad the IVIG helped you! Very glad - you are home!
Hope that July - treats you much better.
I am chronically low in calcium, potassium, and magnesium.
A note of caution.
The magnesium - does NOT apply - to many MG'ers.
Many MG'ers - must avoid magnesium.
I take OTC supplements, for calcium and magnesium.
A banana a day, for the potassium.
I also take a prescription Vitamin-D, due to chronically low levels.
My sodium is okay.
As you probably know, all of these electrolytes are critical to the proper function - of acetylcholine receptors.
And - many other neurotransmitter ''gates'': also require healthy levels of all the electrolytes - that you mentioned.
That's the limit of my understanding.
I don't know why - my levels are low.
I just follow the advice of my Neuro/MG Specialist.
(Who hasn't failed me yet.)
- Ross
so glad you got to go home and are getting your strenght back. I know I am on lasix so lost a lot of water weight this past week. I feel that was what was happening to me last night.
Prayers that July is a better month for you,
Annette
hugs,
~sherry
Best wishes,
TJ
Sorry about your hospital stay. Your post reminded me of something I read on the KC MGA website:
http://mgakc.org/wp-content/uploads/2012/04/MG-MUSCLE-CRAMPS.pdf
The link is about muscle cramps, but it mentions potassium, sodium, and calcium are necessary for muscles to function properly and suggests MG patients request lab values for them anytime blood is drawn. I'm going to talk to my PCP next time I see her about checking those values occasionally, since she seems interested in helping me prevent problems from MG.
Could you follow up with one of your doctors and see if you should supplement?
Take care,
Rhonda
This is a very helpful post. I have had low potassium at times, and believe it may be associated with or affects mg.
I hope we will get more posts to learn even more.
I hope you will not have to be in the hospital any more for a long time.
Hugs,
Olliepop
Sorry about your month!
I have been dealing with low potassium issues for over six months now. I get infusions with my IVIG and I take prescription... but it still goes back down (was a 2.8 before infusions three weeks ago.) They do not know why this is an issue for me.
The symptoms of low potassium are so similar to MG symptoms for me that it is hard for me to tell. The difference seems to be felt in my ability to fall asleep at night. My legs get really "agitated" sometimes and the potassium levels have appeared to go along with them.
I hope you can get your levels up and feel better soon!
Love, Becca
Very interesting that so many of you are dealing with this issue of electrolytes. I don't know if anyone has had their arterial blood gases checked (it is awful!) but the low potassium for me seems to be connected to chronic respiratory alkalosis (C.R.A.). It is kind of circular because that can be caused by low K+ but it can be caused by meds too.
It is so strange because CRA is where a person generally overbreathes. My breathing is slow, unless I am having one of my random tachycardia events (autonomic dysfunction care of LEMS likely). In rare cases, a person can very much underbreathe and get it too. The docs don't really understand it cuz my respirations were low.
Anyway, I am feeling numb since yesterday around my mouth and my fingertips and toes and I have gotten chilled and I am kinda hazy-headed, you know? And I know that it is not MG. My neuro is drawing labs on Fri when I see him but right now, that feels awfully far off. My K+ dropped from 3.5 to 3.0 in 12 hours in the E.R. before they started replacing it.
debra
Thank you for sharing. I have labs and appointments coming up and will be sure to bring up these issues
Continued strength.
Larissa
Love, Cathy
Sorry you are having such a tough time. What meds are you on. It's funny, but I have also been feeling numb around my mouth and fuzzy thinking, sometimes dizzy. I just started celcept, so thought it might be from that.
Becca, I was having terrible restless leg at night. I kept asking if this could be from mg or drugs. My neuro ran some blood tests and found I was anemic( which can cause restless leg syndrome. Once I got my count back up, i was fine.
good health to you both.
Judith
Dean
I just started with my leg giving way last night and trouble walking- in addition to all the weird and spooky electrolyte imbalance symptoms. I am very concerned this looks like the beginning of how it was a few days before the last hospitalization and I just got home on Saturday. My decline is just so rapid.
Hoping I am wrong,
debra