Strong Probability I have Myasthenia Gravis
Hello, there is a strong possibility that I have myasthenia gravis. Symptoms started a couple of years ago with strange facial looks and a sarcastic tone at times when I was talking with people.
Last year a slight slur was forming in my voice. This year it has progressed to the point of bad slurring in my voice. Then in mid-March I had numb fingers, hands, and toes. I saw my nurse practitioner in early April 2024 and she thought it might be a transient ischemic attack or mild stroke. She ordered an ultrasound and a cat scan to be performed that month.
Testing and progression
After my tests, I had a phone call to tell me there was no sign of a stroke then had an appointment with the nurse practitioner. I was booked for another appointment to confirm this and see what else we should do. My husband and I confirmed that appointments should be made with a neurologist and an ear nose and throat specialist.
Symptoms got worse for me. I had problems chewing food and choked six different times. One time my husband had to do the Heimlich maneuver to help me after a piece of banana got caught in my throat. Then other times after a piece of bacon, bologna sandwich, and a small piece of meatball.
In June, I was able to eat a couple of slices of pizza, but I could not cut the pieces with a knife with my right hand being numb. A few days after my right hand numbness, I was alone at home and made two slices of pizza and cut them using a huge knife into small pieces and started eating one small piece. Then I put the next small piece into my mouth and started choking.
I called my husband on my phone. After choking for 18 minutes, I was able to clear out my mouth with my fingers of the extra pizza that was left in the lower front of mouth. My numb right side of my tongue and cheek couldn't figure out how to chew it right. I leaned over the kitchen sink and did my own Heimlich maneuver.
More testing and the waiting game
The next day, I had an appointment with my neurologist and he sent me for blood work. I had that done in a nearby town. The bloodwork has to be sent to British Columbia and could take another 4-6 weeks to confirm that this is what I am dealing with. His office scheduled an MRI that I will have done in September.
Since June, I have been taking Boost, and eating strawberry yogurt, apple sauce, chocolate or butterscotch pudding, cream of broccoli soup, vegetable cocktail, mashed potatoes.
In the mornings when my husband Richard is around, I am able to have my oatmeal with cinnamon and blueberries, a warm cup of tea with a bit of skim milk, banana, mandarin oranges and orange juice. Lunch when Richard is home includes steamed brussel sprouts, chicken tenders, and salmon.
I cannot write with my right pointer finger. For writing I have to use the middle finger to write grocery lists. I cannot cut with a knife with my right hand, I noticed this mid-June. My right hand cannot use a fork or spoon for oatmeal or desserts.
The hoarseness in my voice got really bad, then I had major slurring and no one could understand me when I talked. I was coughing all time over the last 2 weeks and went to the emergency room on June 29th. I was coughing really bad and choking. The emergency doctor ordered a cat scan and that came back with no sign of a stroke. They found a small nodule on my left side of my throat though, and an MRI appointment call is supposed to be made for us in the hospital - but I have not received a call for an MRI appointment.
Is it myasthenia gravis?
I had an appointment with the nurse practitioner on July 5th to give us more information about myasthenia gravis. She ordered a barium swallow test to check out my throat and esophagus. This same week I had a lot of phlegm/mucous in my throat and was coughing and choking a lot. I had two choking episodes that lasted several minutes until I could breathe again. Scary.
I also went to emergency room again a few days later as I was having too much coughing and choking going on and I was seeking medical help. They ran a number of tests. Then one ER doctor checked my body over for signs of myasthenia gravis. Then we were waiting for the ER Doctor to see us again, and a different ER Doctor saw me.
They ran more of a physical exam of my body and decided to prescribe me with one 30mg of pyridostigmine. I received that after a swallow test was done on me. He also ordered another ultrasound to check out the nodule on the left side of my neck.
After having the one pill of pyridostigmine I felt a lot better. I went to my pharmacy and was told I would receive my meds in a few days. Before I got my meds, my choking episodes of breathing happened twice that night. My husband contacted the pharmacy in our small town and was able to get my meds sooner, and I was able to take one pill and within 30 minutes and felt better.
Last week I started to use a cane as my hands, arms and legs are numb. I do a 10-minute stretch video each morning and my seated exercise bike downstairs for 5 minutes in the morning. I'm waiting to see the neurologist for advice on how much exercise I should be doing these days.
Moving forward day by day
So now, we are seeking advice from speech-language therapy, nutrition counseling, and physiotherapy to help me move forward with my disorder. My husband spoke with a speech-language therapist and she sent us info. I checked out a video on how the throat and tongue work to swallow water, saliva and food.
The right side of my tongue was numb for a couple of months and the right side of my face and I was not aware of this. I was able to go out last night for a meal - I had cheese logs - 1/2 inch wide and 3 inches long of cheese in a small wrap and I nibbled bit by bit and dunked it in marinara sauce. Today at lunch I cut really small 1-2cm pieces of chicken tenders in a barbecue sauce and soaked the chicken tenders in the sauce and was able to eat 3-5 little pieces and both sides of tongue and mouth chewed slowly.
I need to get info from the speech therapist and nutritionist on what I should be eating. The physiotherapist could give me info on which exercises I should be doing. My tongue and cheek are working again, but it will take a while to learn how to eat without having issues. The speech therapist will help with that. I can't drink bottles of water by lifting my head up. I use a straw instead.
And I was able to sing 2 lines of "Rise and Shine" and "Give God Your Glory, Glory, Glory" to wake hubby up. I sounded reasonably pleasant, but my voice needs a few weeks to get back to sounding decent after several weeks of coughing and straining it.
My arms and legs are still feeling numb. I will use the cane as long as I need it. My tongue and mouth need time to learn what to eat and how to eat. I will stick to what I am eating and drinking for now.
As for talking, the slur is minimal for now. I need a week or two to get over the constant coughing over the past few weeks. Then I need to get the mouth used to forming letters into words with the tongue behaving and not going numb on me. I will take my meds 3 times a day, and I need time to get the meds into my body and for my body to adapt to it. It takes time, but I have lots of family and friend support.
Join the conversation