Hi Ellen!
I apologize profusely for not replying to your request…thankfully I read it when looking for information regarding COVID and MG.
In September, 2019 I was admitted to MassGen in Boston, which in my opinion is a premiere hospital. I went to have exploratory surgery because I had a predominant taste of salt in my mouth all the time. I hate salt! Everything tasted like pure salt and even drinking water choked me it was so salty. I begin to lose a tremendous amount of weight and became malnourished. At the same time, I had been battling a constant cough that I’ve had for 15 years and no one could figure out the cause. I’d had so many appointments with specialists ranging from: eyes, ears, nose, throat, stomach, et cetera. The exploratory surgery specifically was an endoscopy. During the surgery, one of the doctors noticed from my mri that my thymus gland looked as if it were beginning to grow so a discussion ensued. A team of doctors couldn’t decide what was causing the cough and salt taste so one thing they suggested was to remove my thymus. This was no small thing…they begin by cracking open your chest as they do during open heart surgery. I didn’t have time to worry about this because they did it two days after my exploratory which was great because I probably wouldn’t have done it. The surgeon inserted a feeding tube also as I was very malnourished. Let’s just say, coughing incessantly after this surgery was in a word horrible. In the end, I still had the salt taste and cough.
Over the following two years the salt taste finally subsided!! We still have no answers as to why but I’m just glad it’s gone. I never liked chocolate and now I do and many things I used to love like pasta and bread I don’t really like any longer? I finally had my feeding tube removed after 9 months but it had to be done surgically. I was just happy it was gone. I had a fairly good summer in 2021. In October we were moving back from our summer home and I did a lot of packing, organizing et cetera. All summer we had lots of company and I cooked, cleaned, changed linens daily and planned fun things for our guests and begin to really get tired after dinner…highly unusual for me. Then one night when climbing the stairs to our bedroom I told my husband I didn’t think I could do it. I was scared and he just helped me and I went to bed. I tried to get up during the night and couldn’t use my hands at all! It was as if someone inflated them and they wouldn’t move. I woke my husband and he helped me into the bathroom…then I tried to take a drink and couldn’t swallow. By morning my mouth on the left side drooped. I then thought I had a stroke. I called my doctor and he got me right in. He thought I had Bell’s palsy and everything went downhill from there. He thought maybe my hands had problems that required a hand specialists opinion. I got into one within three weeks but in the meantime had begun losing lots of weight again as I couldn’t swallow! The hand surgeon took one look at my hands and told me I had a much bigger problem than my hands. He drew blood, took X-rays and pulled strings to get me into a neuro-muscular diagnostic doctor the next day after his regular hours. The hand surgeon guessed it was als or md. The neuro-muscular doctor was unbelievable…he examined me for 2 1/2 hours and ruled out als immediately so we were very grateful. The alternatives it could be were very scary as well. I had to wait over two weeks for all the blood tests results to come back and when they did, they did not support any diseases he thought I had. He thought the steroids my doctor had put me on had skewed the results so he redid all the bloodwork…now it’s the middle of December!! The steroids were causing me loads of problems so they needed to stop them. After waiting 3 more weeks for results I was diagnosed with myasthenia Gravis. My pcp only heard about mg in college and never in his 36 years in practice. He began to study as much information as he could get. He, along with the diagnostic genius, recommended a neurologist who started me on mestinon and Imuran. After 10 months of treatment I can now swallow, my mouth is better and my right hand is doing great but my left hand is taking its time. During all of this the neurologist always is so puzzled that I have mg as he feels I’m a unlikely candidate and didn’t have the eye drooping and relatively isolated leg involvement. Now he thinks it could be that during the thymus surgery a piece of the thymus might have dislodged into my body and caused the mg. He wants me to have the thymus removal procedure done again to see if that’s what happened. I’m very opposed to this. Sorry I got so carried away but living with this has changed my life in so many ways that I find it irritating, depressing and puzzling. I’m still coughing so that’s a huge consideration also. Hope you are doing well!! Peace, Carrie