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...
The discussion has come up here lately about the counting test for respiratory function. I started looking for documentation and found the following:
http://pdm.medicine.wisc.edu/Volume_25/issue_3/rega.pdf
http://www.lilywhite.us/myasthenia.html
Does anyone else have anything on this? My question is what is the rate at which the counting is done? How many numbers per second? Does it matter?
http://pdm.medicine.wisc.edu/Volume_25/issue_3/rega.pdf
http://www.lilywhite.us/myasthenia.html
Does anyone else have anything on this? My question is what is the rate at which the counting is done? How many numbers per second? Does it matter?
I am so glad you checked and then rested. This heat is kind of scary.
Cathi
What is the definitive speed at which we are supposed to count? 2 seconds between each number seems like an absolute eternity, B.
Also, when my chest is tight and I am struggling with my breathing and wondering if I am going to have to go to the ER, the very LAST thing I want to do is to spend precious strength and breath on counting. I have not been able to force myself to do the counting at that point. SIGH...
Rosie
Saw your post about the breathing counting test. B had posted the 2 secs but she mentioned that was for studies. I have had several doctors ask me to do the breathing count test. I have always just used a normal pace. The doctors have never corrected me about the pace I counted.
It is important that you know your normal breathing count test. If you have difficulty breathing, you need to be able to measure your level of distress and communicate that to your doctor. Be sure to tell them your normal breath count rate verses what your rate is now. It is a good measurement to determine if you need to go to the ER.
If you do not like doing the breathing count test you have the option of using a peak flow meter. I use both. If I am in distress I find the peak flow meter easier to use and more accurate.
Hope this helps.
Bruce
A doc told me
inhale
and when I exhale...count
if I can't count to 17 go to ER
I felt more comfortable when I used the meter
Ann
If you don't want to waste your breath counting, you can bet that you should spend that breath making arrangements to get to the hospital.
When you have a dip in breath count such as when workng or ecercising and you stop, if that count is not returning to normal or at least improving that is a very bad sign and I would not wait for it to get below twenty before contacting the neurologist and making plans for the hospital (You said you were already packed, that is worrisome, Rosie. Not so much that you are prepared, but that you feel the need to be, at short notice.) b.
Last Thursday night, my breathing was very uncomfortable again and my feet felt so heavy I could barely pick them up off the floor. I used my husband's bipap and made it through the night. The next morning, I went to my neuro's office and parked myself in the waiting room while I downloaded three videos and a bunch of photos... and made sure he would take a look at them so he could advise me on how to evaluate my breathing. I was really concerned about making it through the weekend, considering the generally downward trajectory I had been experiencing. My neuro told me that if I could not catch my breath, I should go to the ER... but I am reluctant to do that because they will just think I am nuts again and waste my precious time and strength.
Now that I am being tested for Hypersensitivity Pneumonitis, I am learning more about this and realizing that, if I do have it, I have been putting myself in jeopardy in my own home... by camping out in front of a fan that was blowing cool air right past my parrot's gigantic cage. So, this weekend, I cut off all contact with my bird and set myself up in a closed air conditioned bedroom, while she remains in the dining room (with all of the doors closed). Other than last evening, when my chest felt a bit tight, my breathing has been quite acceptable for the entire weekend!! As long as I stay put in my one room, I do not feel concerned about my breathing getting out of hand.
Tomorrow, I will be seen at Mass Eye and Ear, Wed I will have my MG blood panel drawn, Thur I will have a high def chest CT scan and later this month I will have pulmonary testing with pressure and an echocardiogram. At some point, my HP blood panel will come back and hopefully provide some answers. Besides MG and HP, I am also being looked at for small airway disease. So... I WILL make it in one piece until somebody figures out what is wrong with me!!!
I did not mean to be so long winded (hehehe... wishful thinking!!!), but I really do like your idea about the peak flow meter, Bruce and Ann. I will call my Pulmonologist and ask her how to get one! This idea makes me feel a LOT better equipped to get to know my breathing and to obtain concrete information about any further breathing difficulties!
Thank you, dear friends, so much for your help!! I can't imagine where I would be without you all!!!
Rosie
this is interseting to me
really sorry about my misreading--guess my eyes are better-or my memory
Without a metronome or to establish a "normal" for yourself, consistency in counting is important-- Just use your regular cadence, like counting for a child. A falling breath count of any number that does not respond to rest is a major danger signal.
b.
Thanks for all the posts but I realize how little I know or understand. When I was first diagnosed I had few symptoms and was blas
About it. Now the more I read the more overwhelmed I get. Please keep posting for people like me! Karin.