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...
Hi All!
I'm here because I believe I may have MG. as I write, my chest is swelling as I gasp for breaths. My muscles in my diaphragm are sore.... This is my latest symptom. My primary started to treat me for tachycardia in October of last year, it doesn't work as well anymore. I'm noticing an increase in shortness of breath and fatigue.
About 1 month ago, I took a photo of myself and was shocked to see how droopy my left eyelid was! No matter what I did, I couldn't get it to open. My husband said he notices it when I'm tired. My optometrist referred me to an opthamologist... Still waiting to see him. This was followed by a few episodes of severe photophobia....dizziness, floaters and had to be driven home from work.
I've been having many "vague" symptoms over the last year and a half. I've been to many specialist.....I have achalasia which was attributed to my lap band, however, they cannot know for sure. I have esophageal spasms, as well. I'm soooooo tired. My left eye gets tired by 1:30 everyday and a headache follows. My legs, groin and thighs get like jelly. I just want to be horizontal. My ability to maintain my home is dwindling. Yesterday my legs were weak and today I can't swallow? I haven't had issues swallowing in months...., yet I could stand snd walk..,until 8:00 and wanted to collapse. At that time my chest is sore and breathing is laborious.
I could go on but it really is too much. I'd love to hear your experiences...thanks for listening!!
I'm here because I believe I may have MG. as I write, my chest is swelling as I gasp for breaths. My muscles in my diaphragm are sore.... This is my latest symptom. My primary started to treat me for tachycardia in October of last year, it doesn't work as well anymore. I'm noticing an increase in shortness of breath and fatigue.
About 1 month ago, I took a photo of myself and was shocked to see how droopy my left eyelid was! No matter what I did, I couldn't get it to open. My husband said he notices it when I'm tired. My optometrist referred me to an opthamologist... Still waiting to see him. This was followed by a few episodes of severe photophobia....dizziness, floaters and had to be driven home from work.
I've been having many "vague" symptoms over the last year and a half. I've been to many specialist.....I have achalasia which was attributed to my lap band, however, they cannot know for sure. I have esophageal spasms, as well. I'm soooooo tired. My left eye gets tired by 1:30 everyday and a headache follows. My legs, groin and thighs get like jelly. I just want to be horizontal. My ability to maintain my home is dwindling. Yesterday my legs were weak and today I can't swallow? I haven't had issues swallowing in months...., yet I could stand snd walk..,until 8:00 and wanted to collapse. At that time my chest is sore and breathing is laborious.
I could go on but it really is too much. I'd love to hear your experiences...thanks for listening!!
Sorry you have to be here, but glad you found us. I can totally relate to being driven around and having a messy house and MG change my life. Took a while for my diagnosis, too.
I can't write for long because my eyes are getting weak... But welcome...
I so hope you find very good days ahead. Here you will find lots of kind people and I know I have found great advice....
I'm pretty much a newbie, too.. Only a couple years into this, but just found this site a little bit ago..
Best wishes,
Koev
He wanted me to check in at another time and see how whatever I have progresses. He did find my legs very weak and suggested I exercise more.,.,work through the pain and fatigue. I agree, I do need more exercise but the leg fatigue is sooo tiring:(
Thank you for the Mestonin advice. My new primary thinks there i an autoimmune beneath all these symptoms. Maybe she'll do some bloodwork. She's young and still open minded!
How did everyone find out and how long did a diagnosis take?
I get most of my symptoms on my left side of my body. For instance, my left shoulder is sore and fatigued. My breathing is labored from a trip to the mall. What I once used to love to do, shop, I now dread. I just want to go home and lay down :-(
Do your symptoms sort of hop around ? For instance , my eye issues lasted for about 6 weeks, and when they subsided, my breathing and swallowing problems started up. I actually am
too tired to talk......my poor kids. Also, my affected eye muscle twitches soooo much starting in the late afternoon. Is this something MG'ers experience? Thank you for your input.
Mestinon working is a tell sign. I took this before results were in for MG blood test. I tested positive.
You need a neurologist and especially if your PCP is not diagnosing you correctly. This runaround to different MD types is not uncommon with MG. You already have neuropathy, so you should be seeing a neurologist anyway. You need to get some help and cannot afford to lose more time messing around. Please keep us posted. I responded to your other email also about MG test. Be well and keep us posted.
TJ
Good Luck!!
Mine started with dropy left eye lid and then went to belspasy like sysmptoms and i was diagnosend with an achr teest if it comes back above 24 then you most likely have MG also get in touch with the MG foundation they can send you a book that covers most of your questions and helps you better understand what is going on and you can guide your doctor my nureo gave me there info and told me to get the book.
Chuck