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...

1,709 Members

7,414 Posts

0 Online

gonegirl3 02/14/2017

My journey started about a year ago. I developed blurred vision and drooping eye lid on right side only. Saw my opthalmologist who felt I was allergic to my contacts and dx with GPC (Giant papilary conjunctivitis). I was ordered around of steriod drops and two other eye drops. My drooping and blurred vision cleared. This reoccured three months later and I was retreated over the phone, again cleared up with the steriod drops. I later developed the blurred vision, droopy eye lid and stabbing pain behind eye and Opthalmologist saw me immediately and felt my eyes were in "good health". He was concerned and sent me for CT of orbit. CT was negative and I was referred to a neuro-opthalmologist. This Dr took 3months to get in to see and I was put thru a series of tests and was given a report that my "eyes were healthy". She did send me on my way with a script for MRI of orbit. Which turned up negative per her secretary and she did not feel a follow up was needed. Feeling frustruated I reached out to my family physician (whom I am new with) and she did refer me to neurology and stated she felt I probably had atypical migraines. I saw a neurologist whom I felt very comfortable with and she ordered several labs and MRI of brain. MRI was negative. ANA positive and 1:80 homogenous pattern was seen. Everything else came back normal. At follow up I had begun having some upper burning sensation in my right arm with sweeping floors or doing my hair, felt very heavy. Neurologist did feel that I also had asymetry of the face and slight weakness on right side at initial visit which I did not notice myself. After second visit Neuro ordered MG testing and felt It was likely what was going on. She ordered EMG which was negative all labs including MUSK came back negative. I did have a high CK total. I then started developing a hoarseness to my voice and a breathless voice, I could not finish a sentence because the words would not come out (lack of breath). I followed up with neuro and she still feels I have MG and is sending me onto a neuro who specializes in neuromuscular disease. I now have a weird sensation in my chest, below the "notch". I have been short of breath and tired. My symptoms are never all together and vary daily, however the sensation in my chest has not left since it started and worsens with stress, crying, laughter which then leads to shortness of breathe and hoarse speach. Can Anyone that has had any of these give me any insight? Do any of you have these symptoms that come and go?

Joe_Fodor 02/15/2017

When I have MG symptoms, my voice gets super annoying -- nasally, flat and unpleasant. Do any of your symptoms improve with rest? That's the big question and will tell you if this is muscle-related or perhaps something else. Does 5-10 minutes of resting an ice-pack on them improve your eyelid-droopyness? (That's how I was diagnosed!) I've heard of a lot of misdiagnoses on the way to an MG dx, but this is the first time the MG symptoms are blamed on an allergy to contact lenses! ~joe

gonegirl3 02/15/2017

My symptoms do subside with rest. And I'm sorry I may have worded that wrong...my opthomologist didn't feel MG was a result of contact allergy, but my initial dropping eye was a result of contact allergy. But once the infection was gone and my droopy eye returned he felt I needed further work up. (Hope that makes more sense). My chest and throat symptoms increase with laughing, crying, stress and decrease with rest. In the am I have no symptoms but by mid morning/early afternoon is when my symptoms start.

Resilient 02/17/2017

With my early eye symptoms i was checked for thyroid disorder, of course thyroid tests were negative, my face droop was termed bells balsy, eye doc could not find a cause for double vision. I too told the doc's of a wierd sensation as you describe in your chest, I was told it's anxiety. All my ct scans & MRI's were negative. After years of suffering & reading trying to help myself (diagnose) I felt strongly MG fit my symptoms and asked for testing, all blood work for Myasthenia came back negative & I suffered more years till a "New" neurologist ordered a Single Fiber EMG, it was positive and I started treatment! I also had a long history of positive ANA.

gonegirl3 02/18/2017

Thanks for posting. My neurologist strongly feels MG. But also stated she just doesn't feel comfortable starting medications. She has referred me to a neuro muscular specialist who deals with MG. They got me in really quick so maybe I will have answers next week.
Can I ask if your symptoms come and go? When I awake I don't have any symptoms and as my day starts I get the sensation in my chest, some days my voice is weak and some days I'm SOB. Some days I have droopy eye and blurred vision. Some days it's my right arm. Stress definetly heightens my symptoms and rest alleviates them. But some days when I have no symptoms I think maybe it is just a virus or in my head. Then the next day I will have symptoms again

Quen1966 02/18/2017

Hi Gonegirl3, I wanted to answer your question does the MG symptoms come and go, yes they do. I can wake up feeling energetic at 8am my eye is a little droopy, but not as noticeable but I can feel the twitching because its time for my morning dose or Mestinon, I walk with a MG waddle, but my leg doesn't drag as much, so I can say my day has started pretty good. By noon I start going down hill the symptoms become more apparent I take my noon Mestinon, then by 4pm I chronically fatigued and become very weak, ready to lie day and rejuvenate, my speech becomes slurred, my neck muscles become weak and I just want to lie down. I describe myself as a whine up doll. I start off good and throughout the day I whine down.

Resilient 02/18/2017

Yes the symptoms can come & go and affect different muscles at different times. When Im doing well in general there is still more fatigue & weakness as the day progresses. I try to switch muscle groups throughout the day so I dont over due it. Like after sometime using the eyes doing paperwork or reading I switch to some chores using arms/legs etc. By noon everyday I take a nap to get through the rest of the day. I'm having a flare right now from physically over doing it a few weeks ago, so today my eyes are extremely weak as is my facial muscles & my neck. The muscles that are weak can change to different muscle groups with no rhyme or reason. As member queen1966 describes herself as a wine up doll, I call myself the energizer bunny whose battery is running out! Please let us know how your appointment goes. In the meantime resting as much as possible wont hurt. lying down & resting is very helpful for me when I am short of breath.

gonegirl3 02/18/2017

Thank you both!! I will let you know. Just hoping for answers. The shortness of breath is very scary and my dr told me to not over exert and what medications to avoid in a crisis and hopefully avoid intubation. Those words were tough to swallow

Sweetadrena 02/20/2017

Gonegirl, I certainly hope you get answers soon, but it sounds like your symptoms are following the same pattern as my dad who was diagnosed with MG. There is a blood test that will confirm it if you feel it is a possibility. My dad has days you can barely understand him and other days he speaks perfectly normal. At first they thought they were going to put him on a feeding tube, but after they have started the medications he seems to be doing much better. Hang in there!

gonegirl3 02/26/2017

So I had appt with nuero muscular specialist. He says 60/40 chance of MG. He scheduled me for EMG (I had one of arm done already) but he will repeat that and also add face and leg. If those are negative then he will do sfemg same day. He also gave me a handout on MG and medications not to take. My breathing and voice issues have progressed and I am noticing this almost daily but severity fluctuates throughout the day. He did have me do single breath test at appt and I could only go to 10. He did say he felt my left arm weakness and heavy feeling was not related to my other symptoms. I have to disagree. Frustrated and the breathing issues have me freaked out!!! Does anyone have certain things that trigger the breathing difficulties? Also if I don't have MG what do I have???

Resilient 02/26/2017

I have been watching for your post and hoping you will get some answers soon. Sorry to hear you still dont have a definite answer but looks like someone is at least running the right tests. Do not stress yourself with "what else it might be" until you get these test results, I have learned not add any more fear or stress to my plate until & unless I have to. (i know sometimes easier said than done). As far a trigger for breathing issues, I cant comment on any known "triggers" personally maybe some one else can advise on that, but things that can make it worse are heat, physical activity , meds, infection and for some monthly menstrual cycle, and we know stress makes the weakness worse and for me that was heightened by the fear, crying and anxiety of not knowing what was going on. If the breathing issue is that bad you should go to the ER, dont try to hold out for the next apt. Thats how I got help, they suspected I had MG was waiting for SFEMG test but my breathing was getting worse (along with rest of body) so went to ER, told them of the suspected MG, was given mestinon and that helped just enough to get me to the next appt and start treatment.

gonegirl3 02/27/2017

Thanks Resilient! My breathing this weekend was ok, I did take it easy quit a bit. Like youvi noticed crying or even laughing exacerbates it. Wasn't sure if anyone has any environmental issues.,,such as smoke or fragrances that add to issues? I definetly will head to er if need be, just a little reluctant since I am in a rural area. I find myself googling a lot! One more thing the heaviness and weakness I feel in my right arm after showering, blow drying my hair,vacuuming...have you had any experience with that?

gonegirl3 02/27/2017

Can anyone describe what your breathing g feels like? I have a sensation just below my sternal notch that's there at the start and remains once I start having shortness of breath. Feels like I've just ran a distance. This is when my voice becomes strained as well and hoarse.

Resilient 02/27/2017

For me my muscles feel like I've done A LOT of situps & i explain its not that im not getting air the muscles just arn't working. instead its like I ran a marathon and I only walked a few feet. Yes to the arms one of my first exp. was taking laundry out of the wash machine, felt like I was pulling out bricks and they were only socks! my hairdryer doesnt get used much for that reason, and when i can vacum I alternate arms. I do have issues now with fragrance triggering migraine & allergy induced asthma attacks but the only time that affects the MG is if I were to have prolonged coughing like when you have a chest cold that overworks those muscles. I am actually a smoker not much but still a smoker ( I know not good) I quit a few times & restarted (try try again) anyway the smoke has never triggered anything but when I am weak I do not smoke, I need those muscles for breathing, talking & swallowing (not sucking on a cig). Lastly when my digestion muscles are not working right I get silent acid reflux, making breathing more difficult & hoarsed.

Join the Conversation