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...
For the first time since I was diagnosed with mg I was truly afraid that I wasn't going to make it.
I woke up at 4 am feeling great for the first time. I had no trouble breathing, no weakness, and vision was clear. I thought that the day was going to be fantastic for the first time since my diagnosis and went back to bed. But that was short lived. I woke up at 7:15 with my legs feeling a bit weak so I stayed in bed and went back to sleep,
When woke up later I couldn't breathe. I was wheezing so bad it sounded like the muffled sound of a bunch of geese honking. I've had trouble breathing before but never this bad nor after being at rest. I knew that I needed oxygen desperately so I got up and went to the livingroom where the oxygen was. By the time I got down the hall (about 10 feet) I was already seeing spots and things were beginning to go grey from not getting enough oxygen. My husband was in the livingroom and when he saw me he knew I was in trouble and asked me what I needed. I could only say "oxy". I couldn't get the whole word out. By the time I got the oxygen on things were beginning to go black. I heard him ask me about going to the hospital and I could only shake my head no. I knew that if I went to the hospital that I wouldn't make it, that my best chance was to stay on the oxygen. After about an hour I started to breathe just a little better so I got off of the oxygen long enough to use the nebulizer to try to get some relief from the wheezing then put the oxygen back on and have been on the oxygen ever since.
I'm still having trouble breathing today when I try to talk or get up and move around but at least it's not as bad as yesterday. I can control it today by just staying put. My doctor is out of town all week so I can't contact him besides he would just say go to the hospital. All they do in the hospital is put me on oxygen and poke me with needles all day long. I can use the oxygen I have at home and be much more comfortable in my own bed.
I hope that those of you that have never experienced this never will. For those of you that have, I pray that you never have to again. No one should ever have to go through that.
Barbara
I woke up at 4 am feeling great for the first time. I had no trouble breathing, no weakness, and vision was clear. I thought that the day was going to be fantastic for the first time since my diagnosis and went back to bed. But that was short lived. I woke up at 7:15 with my legs feeling a bit weak so I stayed in bed and went back to sleep,
When woke up later I couldn't breathe. I was wheezing so bad it sounded like the muffled sound of a bunch of geese honking. I've had trouble breathing before but never this bad nor after being at rest. I knew that I needed oxygen desperately so I got up and went to the livingroom where the oxygen was. By the time I got down the hall (about 10 feet) I was already seeing spots and things were beginning to go grey from not getting enough oxygen. My husband was in the livingroom and when he saw me he knew I was in trouble and asked me what I needed. I could only say "oxy". I couldn't get the whole word out. By the time I got the oxygen on things were beginning to go black. I heard him ask me about going to the hospital and I could only shake my head no. I knew that if I went to the hospital that I wouldn't make it, that my best chance was to stay on the oxygen. After about an hour I started to breathe just a little better so I got off of the oxygen long enough to use the nebulizer to try to get some relief from the wheezing then put the oxygen back on and have been on the oxygen ever since.
I'm still having trouble breathing today when I try to talk or get up and move around but at least it's not as bad as yesterday. I can control it today by just staying put. My doctor is out of town all week so I can't contact him besides he would just say go to the hospital. All they do in the hospital is put me on oxygen and poke me with needles all day long. I can use the oxygen I have at home and be much more comfortable in my own bed.
I hope that those of you that have never experienced this never will. For those of you that have, I pray that you never have to again. No one should ever have to go through that.
Barbara
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
You sound like you really, really need to be at the hospital. Please take care of you....I have been there, debra
We wish you peace and safety.
Love and hugs.
TJ
Also, I am with TJ our "good spirit" here, a bit more of meds won't hurt.
60mg for 8 hours that's not enough in my neuro opinion.
Hugs, I wish you better days
-Le
Wishing you strength,
Gail
I would also agree that you don't just wait for your doctor.
I would take a pill of Mestinon when going to bed - that should help with the morning chores. (such as getting up from the bed and down the stairs.) Maybe temporarily you could sleep in the living room even - I can't imagine an mg'er walking down a flight of stairs every morning. (we bought our house 1 month before my symptoms severely appeared and I was so glad we had just bought a bungalow ;)
Take care of yourself Barbara. Make sure your Mestinon is taken regularly (ev 4 hours) or maybe try even taking 1 1/2 pills every 6 hrs (I know increasing the dose for some has really helped).
Also, please try having a green smoothie loaded with dark greens (with some type of fruit (like apple or pear) to sweeten it a bit. Dark greens are oxygen filled and will purify the blood naturally. Having one for breakfast every day will put you in a much better shape. Organic if possible (or peeled if not) And try to look for wheatgrass juices to add to this or drink separately - these are little magic potions for any illness. Practice deep breathing (look up Pranayamas) when you do feel better. Or when you feel like your breathing is shallow, knowing the exercises will help you stay calm and bring oxygen to your lungs naturally.
Let me know if you need anything at all. (I am doing well with my MG thanks to a strict natural diet). For inspiration you could look up Kris Carr (or see my blog). Please know that you will get better. Bad days may come and try to ruin your life but stay strong and focused on getting better.
Big Hugs. Ella.