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...
Last week I had two sets of respiratory testing. The first one on Monday was about 60 hours off mestinon. I started in a little booth with mouthpiece, nose plug and did various breaths in and out in different patterns. Then I had to get an electrode to measure diaphragm strength that went via an NG (nasogastric) tube.
The tech first sprayed my nostrils and back of throat with a xylocaine spray. I had to take a small sip of water through a straw as that was the method of swallowing the NG tube into position. I had a coughing attack and the water went towards my lungs instead of my stomach! A second try had the same result. So I ended up dry-swallowing the tube which went well.
I then had to do more tests -sniffing and coughing, singly and in groups of three. The sniffing went well but the coughing was poor. Then back to the booth for more tests. Then I went on the bike with increasing loads and regular EKG, blood pressure checks and rating breathing and leg muscles conditions. My breathing rate increased faster than expected but I got very confused before having to stop. I couldn't figure out how to keep my rpm above 50 and couldn't do the required breathing breath in/out tests. I was able to start my regular Mestinon 4x60mg per day right after the test finished.
All this was repeated on Wednesday about an hour after my Mestinon dose. I was able to swallow water with my throat frozen. My coughing muscles were stronger too. When I did the bike part I was able to continue a little farther, breathing still very rapid but I was not confused like the previous time. The results of various parameters were very similar when they overlayed the two days of results.
I'm waiting to hear what possible diagnosis the doctor will propose but the tech said it points to a metabolic disorder and I was going into anaerobic exercise sooner than expected. No explanation why the mestinon helped to some extent. The swallowing problem with freezing does point to MG from my reading.
I'm interested in knowing if any others have had +/- mestinon exercise testing. What should I ask the doc if I do get a call from him? Does anyone else get confused when they exercise? I wouldn't be surprised if I have two overlapping disorders! I have two GI/endocrinological ones already that are as yet not properly diagnosed after 8 years.
Flutebell
The tech first sprayed my nostrils and back of throat with a xylocaine spray. I had to take a small sip of water through a straw as that was the method of swallowing the NG tube into position. I had a coughing attack and the water went towards my lungs instead of my stomach! A second try had the same result. So I ended up dry-swallowing the tube which went well.
I then had to do more tests -sniffing and coughing, singly and in groups of three. The sniffing went well but the coughing was poor. Then back to the booth for more tests. Then I went on the bike with increasing loads and regular EKG, blood pressure checks and rating breathing and leg muscles conditions. My breathing rate increased faster than expected but I got very confused before having to stop. I couldn't figure out how to keep my rpm above 50 and couldn't do the required breathing breath in/out tests. I was able to start my regular Mestinon 4x60mg per day right after the test finished.
All this was repeated on Wednesday about an hour after my Mestinon dose. I was able to swallow water with my throat frozen. My coughing muscles were stronger too. When I did the bike part I was able to continue a little farther, breathing still very rapid but I was not confused like the previous time. The results of various parameters were very similar when they overlayed the two days of results.
I'm waiting to hear what possible diagnosis the doctor will propose but the tech said it points to a metabolic disorder and I was going into anaerobic exercise sooner than expected. No explanation why the mestinon helped to some extent. The swallowing problem with freezing does point to MG from my reading.
I'm interested in knowing if any others have had +/- mestinon exercise testing. What should I ask the doc if I do get a call from him? Does anyone else get confused when they exercise? I wouldn't be surprised if I have two overlapping disorders! I have two GI/endocrinological ones already that are as yet not properly diagnosed after 8 years.
Flutebell
I was wondering about the placebo effect too! I was walking from my work to the lab (3 blocks) each time and the first time, the tech said "Have a seat while you catch your breath" and the second time I could talk normally.
The most interesting thing is how I fared on the 60 hours with no Mestinon at all. I couldn't carry my laundry basket up the stairs, I had to hold my hubby's arm to walk from parking to a movie theatre, I couldn't sing more than half a verse at church. I think I was in worse shape than when I started the Mestinon in Nov 2013.
I was actually very surprised how reproducible some of the testing results were, after the testing was complete. The confusion off Mestinon was just a magnified version of what I feel most days. I almost fell off the bike when dismounting so something happens with exercise that spreads to my brain too. Not sure if it is C02 related yet, as that data still needed to be analyzed.
Now I wait for the doc or tech to call!
Flutebell
Good Luck
When I am very weak, my thinking process is also weak. Just sayin'.