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...
It's been a rough day. Still not on any meds. Still waiting on a diagnosis. Woke up to diarrhea all day long. My left eye is still closed. Finally thought I would try & take a shower around 4. Finished my shower & started drying my hair & it hit me, I was so weak I couldn't stand up, still having diarrhea (TMI), couldn't hold my head up & my eye is still closed! All by myself! No one to help me! It was all I could do to crawl to my bed! I slept for 3 hours! I've NEVER experienced that! Scared me pretty bad! I didn't have my phone with me or I seriously would have considered calling someone! I felt like a rag doll! Usually my symptoms are ocular, neck & arm weakness. Many of you experience these symptoms on a regular basis......overall weakness, swallowing & breathing problems! I cannot imagine! You have my prayers & what a journey you have traveled but yet you help us who come behind you! All I can say is thank you for what a great service you are giving!
Hugs~
Hugs~
Are you any better this morning? This sounds like a trip to the ER time! I had low blood potassium from chronic GI issues and that made me much weaker, especially my breathing. I was at the ER several times because of it years before my tentative diagnosis.
Do you have anyone to take to you to ER? Or can you take a cab? Maybe you can take some Imodium to slow things down to let your body recover? Bananas or a potato baked in the microwave are good sources of potassium and easy to digest with an upset tummy.
Take care and let us know how you are doing
Flutebell
This is a very dangerous time for you ; keep the phone close.
Regarding the Breathing, here is a link to an older discussion about gauging your respiratory adequateness. If the link doesn't work, just type "counting test" in the discussion search box above. Take Care. Chris.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14402384-counting-test-respiratory-function
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I've even gone so far as to call the 911 folks and let them know what symptoms I have when in crisis, and what to look for and where I want to be taken in case I can't speak.
In the beginning it is so hard , because you're not used to taking so many precautions, but it will eventually become a way of life.
Hope you get something sorted out soon and start feeling better.
I was temporarily staying in a motor home while waiting for my house to get finished.
At that time I was generally a lot weaker than I am now. The shower had a corner seat, which was good, because I couldn't stand for a shower, but the glass door had a tendency to stick closed, and had to be wrangled open.
I decided To take a shower before going to bed one night, and it was late. I did not have the strength to open the door to get out, so visions of family members finding me naked and cold the next morning were passing through my head.
My family members were right next door, and were always in and out, but not at night! It was cold, too, so I was shivering, not a good thing for a myasthenic.
I sat down and prayed and kept trying the door when I could gather my strength and it finally popped open.
Didn't mean to hijack your thread, but it is related to showering difficulties.
limpnoodle-You have not hijacked this thread. It absolutely goes with how helpless I felt that day & the thoughts that run through our minds. Naked & afraid "they'll" find me like this instead of worrying about the bigger picture MY WELL BEING! Crazy isn't it?
Hugs to all~