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...
Hello Group! I am so happy I found this. I almost in process of waiting for a neurologist but have textbook symptoms of MG. question: when I lay down al fall asleep I think my muscles are weak/relaxing and I wake up feeling like I wasn't breathing. Brain tingly, numb all over. When I am awake I can consciously breath deeply and am OK. Muscle weakness in face, eye, neck, chest and arms and legs. Trying to get medical attention and have been the Emergency. They have me on 1 month wait list for neuro. Is this a sign of apnea or MG crisis? Scared I won't wake up. Anyone experience this???? Would be so great film for any input.
I would like to share with you my own situation having been diagnosed with MG in Dec 2016.
One day in Dec 2016 around the 16th I woke up with Double Vision. On the 4th day of the double vision, since it did not go away, I went to my wife's eye doctor, he checked my vision, said my vision was 20/20. Saw my left eye lid drooping. Rushed me across the street to the main hospital. I jumped into an MRI machine for 30 minutes. (The purpose of which was to rule out a stoke or blood clot in my brain.) The MRI showed no indication at all of any event happening in my brain. My EYE DOCTOR told me it might be MYASTHENIA GRAVIS and there was a blood test to look for anti-bodies that indicate MG.
The very next day I went to my FAMILY DOCTOR and requested the blood test for MG. It.was done immediately at a lab across the street from his office and 5 days later the results came back and I have the anti-bodies for MG. A lot of the anti-bodies.
I also waited for 4 weeks to see a Neurologist, just like you are doing.
When I finally met him. I TOLD HIM I had MG. I told him about the Eye Doctor and the Family doctor and my family doctor had emailed the blood report to the Neurologist.
My Neurologist did some basic test in the office etc. and confirmed that I had MG.
I had gone close to 5 weeks with double vision at this time when I was in the Neurologist's office.
My NEUROLOGIST wrote the prescription for MESTINON.
My NEUROLOGIST asked me in his office "Why didn't my family doctor write the prescription for the MESTINON way back when. I told the Neurologist that maybe my family doctor did not want to venture into and area of medicine that was not his specialty. He was a GP.
Recently, about 5 days ago, I had a visit with my EYE DOCTOR. He is the one who suspected MG and got the ball rolling. I relayed the story that my NEUROLOGIST told me about "why didn't the GP write a prescription for Mestinon."
My EYE DOCTOR told me that HE could have written the prescription at the time. And, he left me with the impression that HE would, in the future, would write prescriptions for MESTINON when MG is indicated. (I am the second person that he has seen in his office that has MG.)
So what I am trying to tell you is this:
In my case, because I had an excellent eye doctor who knew that a drooping eyelid was a sign of Myasthenia Gravis, I had an MRI on Dec 20th, 2016. Blood work ordered by my GP. And, I had to wait to see a Neurologist 4 weeks later. All the time with double vision.
The Neurologist said ... "Why didn't the GP write a prescription for Mestinon.
The Eye Doctor told me: "I could have written a prescription."
I am not telling you to do an "End Run" around your Neurologist. You decide for yourself if you want to wait to see him/her.
I am just telling you what happened to me.
And, I am of the opinion because of what happened to me that a MEDICAL DOCTOR can write a prescription for MESTINON.
Not telling you to do it. But you could ask your family doctor and see what he/she says.
Mestinon is usually the first drug we are given.
Your symptoms sound more like sleep apnea than MG with the overnight breathing problems. When you wake up, if you can then breathe OK, it is not likely MG, as MG would persist awake.
I was diagnosed with sleep apnea a few months before my MG diagnosis. I don't know if they were related, but probably not, as I am in MG remission and continue to have sleep apnea.
The basic medical test for sleep apnea is a simple one -- you wear a fingertip recording oximeter overnight to read your oxygen levels and see if they are falling too low. If so, then you go in for an overnight sleep study. Some medical places start with the expensive overnight sleep study first, but the more cost efficient ones do the oxygen levels first (I did mine at Mayo Clinic Rochester MN where they try to be efficient!).
You can try your own overnight test -- put a tape recorder (or cell phone in record mode) and tape your overnight breathing and listen to the playback. It has to be close enough to your pillow to record breathing sounds. If you stop breathing and then gasp for air regularly you probably have apnea. If you have a bed partner, they are often aware of it before you are as they can hear the cycle.
Research doesn't show sleep apnea and mg related, however many of us who have MG do seem to have it. The breathing machine we use for apnea is a wonderful addition to anyone with MG, as it helps us when we have breathing problems to keep from panicking and to breathe easily. I used mine during the day sometimes when I needed it.
So go to your regular doctor and ask about an overnight take-home finger-tip oximeter test. Or if you insurance is good, they may just put you in the overnight bed test at the sleep center. The overnight one is sort of complicated as you have to sleep in a hospital, have all sorts of wires attached, and then actually be able to go to sleep there. I stayed up the previous night so I was good and tired to make it work!
Good Luck
Russ
For me, if I lay still and try to sleep, the breathing symptoms continue. I also get strange head sensations, somewhat similar to fainting. It's like I drift and then catch myself and move my head. I've found that sitting up and moving around a bit helps me tremendously. It sucks, and I really WANT to sleep, but if I don't get up the symptoms continue.
I know I feel better on my side and using my GERD wedge pillow... especially because I have so much tummy weight.