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...
I have no official diagnosis yet, as I am waiting to see a Neurologist to have testing done for suspected MG and/or other nerve conditions. Just looking for support to cope with the difficult symptoms I have been living with for awhile now. While my husband and friends are great to talk to about what I am dealing with, they don't full comprehend how awful I feel with my symptoms are in full force. Going on two years with no answers as to what I am experiencing, and beginning to feel like I am going a bit crazy.
Around two years ago I started experiencing random bouts of instances where I found it difficult to swallow, especially when I was laying on my back without my head propped up. My throat would temporarily feel tight and I felt like my saliva was getting stuck in my throat as I was trying to swallow it. I also starting feeling like I had to repeatedly swallow over and over to clear phlegm from my throat, and saliva would start pooling in my mouth. It seemed to happen at random, and came and went so I didn't really think too much of it at the time. Since then, it has started to occur more frequently, now to the point of happening almost every day in varying degrees of severity. Sometimes it gets so bad that I have to spit out my saliva, because I feel like I will choke on it. I also have to concentrate on trying to swallow. I also started noticing other symptoms, such as facial tingling, hand tingling/weakness, pressure behind my eyes, tightness in my neck, dizziness, and difficulty breathing. Most recently, I have started experiencing trouble chewing my food, as my jaw starts to get tired and sore during chewing, and I feel like I can't move my food around my mouth and swallow it properly. The symptoms sometimes come on like an attack, which has led a few doctors to diagnosing me with a panic disorder, and put me on anti-anxiety medication, which had absolutely zero effect on my symptoms. It's especially frustrating, because I know in my gut that these aren't the effects of a panic disorder.
I have since seen several different doctors, as well as two different naturopaths, a chiropractor, and a craniosacral therapists. All of which have come up with no real answers for me. I have been treated for GERD with no relief, been tested for food allergies, tried anti-anxiety medication, had chiropractic treatments, and have even tried an asthma inhaler for the difficulty breathing. Nothing has seemed to help. I have been fighting for months to get a referral to a neurologist, only to be told that a neurologist probably wouldn't take me on a patient as my symptoms didn't seem, to them, as anything dire. It was only today that the doctor I saw mentioned the potential for Myasthenia Gravis and is fighting for me to see a neurologist and get tested.
It has been extremely frustrating, as these symptoms are often extremely terrifying, making me feel like I will choke if I'm not careful. I feel panicky when the symptoms come on, which just make the symptoms worse. My symptoms negatively impact my life, as I no longer want to go out to eat with friends because it's embarrassing nor being able to chew/swallow my food properly, and sometimes I can't even eat much so I end up feeling starving by the end of the day. I also love to lift weights and workout regularly, and my symptoms often affect my ability to work out which ends up just making me even more upset.
Sorry for the huge novel, but I am hoping that while I am waiting on a diagnosis that anyone might have had a similar experience, and can offer some support or ideas as to how to get some relief.
Thanks for listening! Or, reading I should say.
:) Lauren
Around two years ago I started experiencing random bouts of instances where I found it difficult to swallow, especially when I was laying on my back without my head propped up. My throat would temporarily feel tight and I felt like my saliva was getting stuck in my throat as I was trying to swallow it. I also starting feeling like I had to repeatedly swallow over and over to clear phlegm from my throat, and saliva would start pooling in my mouth. It seemed to happen at random, and came and went so I didn't really think too much of it at the time. Since then, it has started to occur more frequently, now to the point of happening almost every day in varying degrees of severity. Sometimes it gets so bad that I have to spit out my saliva, because I feel like I will choke on it. I also have to concentrate on trying to swallow. I also started noticing other symptoms, such as facial tingling, hand tingling/weakness, pressure behind my eyes, tightness in my neck, dizziness, and difficulty breathing. Most recently, I have started experiencing trouble chewing my food, as my jaw starts to get tired and sore during chewing, and I feel like I can't move my food around my mouth and swallow it properly. The symptoms sometimes come on like an attack, which has led a few doctors to diagnosing me with a panic disorder, and put me on anti-anxiety medication, which had absolutely zero effect on my symptoms. It's especially frustrating, because I know in my gut that these aren't the effects of a panic disorder.
I have since seen several different doctors, as well as two different naturopaths, a chiropractor, and a craniosacral therapists. All of which have come up with no real answers for me. I have been treated for GERD with no relief, been tested for food allergies, tried anti-anxiety medication, had chiropractic treatments, and have even tried an asthma inhaler for the difficulty breathing. Nothing has seemed to help. I have been fighting for months to get a referral to a neurologist, only to be told that a neurologist probably wouldn't take me on a patient as my symptoms didn't seem, to them, as anything dire. It was only today that the doctor I saw mentioned the potential for Myasthenia Gravis and is fighting for me to see a neurologist and get tested.
It has been extremely frustrating, as these symptoms are often extremely terrifying, making me feel like I will choke if I'm not careful. I feel panicky when the symptoms come on, which just make the symptoms worse. My symptoms negatively impact my life, as I no longer want to go out to eat with friends because it's embarrassing nor being able to chew/swallow my food properly, and sometimes I can't even eat much so I end up feeling starving by the end of the day. I also love to lift weights and workout regularly, and my symptoms often affect my ability to work out which ends up just making me even more upset.
Sorry for the huge novel, but I am hoping that while I am waiting on a diagnosis that anyone might have had a similar experience, and can offer some support or ideas as to how to get some relief.
Thanks for listening! Or, reading I should say.
:) Lauren
Sounds like you're getting closer to getting a diagnosis. Most of us here have gone quite some time (like you) w/o knowing what the problem is. Year(s) are not uncommon.
A lot of good information on this site ; use the Search feature when you have particular questions.
I predict you'll be feeling a lot better, sooner rather than later.
Rest is crucial. Take Care! Chris.
No question your problems need speedy attention.
To get any neurological condition properly diagnosed, you may have to see a Neuro that practices in a big-city, teaching hospital environment, with an excellent testing clinic.
My local Neuros were kind enough to refer me, to a big city hospital, 110 miles away. Some neurological problems require that, it's simply an experience factor, often in the testing lab.
There are many syndromes that can either be myasthenia, or can look like myasthenia. It's important to be properly tested,to eliminate other possibilities. That may sound scary, but it's actually a good thing.
You can't be successfully treated for a problem, without an accurate diagnosis. Meds differ, from problem to problem.
Have you had a blood test, called an AChR test? Your local doctor, your primary care doctor can order this test. About 70-percent of MG can be detected, with this blood test.
There is a second blood test, called MuSK, that is used if the AChR test is negative. This diagnoses another 15 percent of MG cases.
Keep us posted. It helps to have feedback, as you go along.
Persistent symptoms need to be pursued, until a correct diagnosis is found. So hang in there!
@BCCanada I live in Victoria as well. Waiting to get an appointment with a Neuro as my doctor thinks it could be awhile before I can be taken on as a new patient, which is a bit frustrating. In the meantime, I have just been insisting that something does not feel right and that my symptoms are enough to qualify me to see a Neuro.
Another option is to go to the ER of the best hospital around.
You might get the help you need there.
Ann
My throat closed up while sleeping and I eventually had a sleep study done; now I use a CPAP machine to keep my throat from closing (apnea).
Please keep in touch and learn all you can so you can be your own advocate.