*sometimes it feels like someone has harnessed a Clydesdale to each leg -- and they're pulling me backward when I'm trying to walk forward.
*trying to walk in quicksand is never a good idea
*last month I nearly stabbed my eye out while brushing my teeth because I was trying to force my arm/hand to move when they said emphatically that they just could not be bothered at the moment

Anbesol, I never thought of that, I'm always biting my cheeks and lips and tongue. Is that MG or do normal people do that too (as frequently)? I never thought about it before.

Most of my manifestations are on my right side. My right eye and side of my face droop and I bite my cheek quite often, and my right arm and leg are much weaker than the left.

My weakness tends be more left sided than right and more noticeable towards the end of a day.

When I lay down I feel subtle vibration throughout my body. Prior to my diagnosis I used to think my cat (rest her soul) was the culprit.

The other day I insisted on "normal". I exercised, cleaned house, ran errands with frequent rest. As a result I moved through mud all of yesterday and today is looking much the same.

Brain fog increases when I feel poorly though my neuro insists this is not an MG symptom.

Liquids are becoming increasingly difficult to swallow.

Shortness of breath is more likely present at the end of the day. I notice I often have a need to take a very deep breath . I'm not always successful.

I drop things. I often hit the corner of walls.

I often bite my cheek and tongue also and never made the connection.

Larissa ;)

A registry will soon be out from MGFA. So save your symptom list!

Larissa,
all your symptoms were just what I experienced as I really went downhill this past winter. The week before I started IVIG, I thought I might end up in the ER. I hope you are keeping in close contact with your neurologist and there are plans for more treatment. We can go down fast. Meanwhile as Ann says REST. b.

Larissa,
I by NO means as knowledgable as a doctor or a veteran to this disease, but common sense would lead me to believe that Brain Fog is very possible. If your body is working overtime to function normally, then one would assume you're expending a lot of energy. Just functioning would cause fatigue....mental fatigue as well.

Larissa,

You have to increase your cellcept and give it its due. So far, your dosage has been too low and if it were higher I am thinking you would be better than you are right now. You may want to consider pushing back your MG with IVIG and an increase in cellcept in my opinion.

I think a lot of my symptoms are caused by the prednisone/mestinon, but here goes:

horrible leg cramps at night
tingling of toes and facial muscles, sometimes fingers
shortness of breath by the end of the day...say after 8 or so
heavy, heavy legs and arms by the end of the day; on a bad day, all day
I bump into walls too, many bruises on my arms
using a straw has really helped with swallowing liquids
sometimes my brain just wants to rest but I believe this is due to the overall exhaustion of MG
unable to sleep more than 3-4 hours in one go
ptosis in left eye at the end of the day....I still haven't tried to read a book since being diagnosed in January...do read the paper daily and am on the computer quite a bit.

My symptoms are worse on my left side as well. I also bite my tongue and cheeks a lot when I can't move them out of the way of my teeth. Whenever I try very hard all day, I also vibrate in the evening when I finally relax. And I have the brain fog too, and agree that it makes sense that the brain would become exhausted anytime you're expending a lot of energy. Most of my symptoms are gone now thanks to IVIG, but in the past, in addition to all of the normal symptoms of muscles weakness, there's also been: dropping things, bumping into things, drops of liquid dribbling down my chin when I try to drink. Loss of fine motor control in my hands when they get cold, then when I get overheated I wilt like spinach submerged in boiling water. Tingling in my legs after I run (yay! sometimes I can run!). Walking around all day with food stuck in my teeth, or teeth stained blue from those berries I ate because the muscles in my mouth and tongue are too weak to clear all the food out. Waking up from a nap to realize that my eyelids had become exhausted and could no longer stay closed, so my bare eyeball is pressed against my pillowcase, collecting lint. I suspect I might not be digesting food right, maybe due to weakness in my abdominal muscles. And am I going to pee in my pants right now? I can't even tell. Sometimes I have to burp (which is often, since I swallow a lot of air with my decreased swallowing ability) but if I don't have enough muscle tone in my throat/esophagus, the bubble of air just sits there, waiting, until I turn my head or move my torso in a certain position (forward and to the left), then it bursts out without warning.

Ohh, it's easy for me to say this now that I feel good, but this ridiculous disease is sort of hilarious, no? I mean COME ON.

Wow, I thought this stuff was just normal 'getting older ' ... Kinda mixed with fatigue/MG... It's like you all just documented my last month right here... But you did miss my fever/chills/joint pain that is other autoimmune, I think. And more goofy eye stuff I'm having a hard time with lately. Saw the neuro opthalmologist Fri. Lately I can't use the cell or computer without getting blurry vision (difficulty accommodating). But eyesight is 20/15 when meds are good:)

This has been very interesting to read. I, too, get the vibrating when finally resting supine. We hesitate to mention things to doctors because they are not unflappable when our symptoms are not consistent with their textbook or classic cases of Myasthenia gravis. I am certain I have other autoimmunity going on, Raynaud's for example, but I will include everything here.

Eye droop, especially in evenings. Left eye is worse.
Double vision after 5 minutes of iPhone screen use.
Heavy arms that fall to the bed if I use my iPhone to text or browse.
Weak core that causes general agony all day at work.
Weak, shallow breathing.
Upper respiratory problems during exercise.
Chewing and swallowing difficulties.
Cessation of breathing at night (wakes me up) and loud gasping breathing (my children have told me about this, and its sound sometimes wakes me up).
Twitching when Mestinon is wearing off, without Mestinon after exercise, and without Mestinon when things are going to heck.
Tingling cheeks (steroid or MG?)
Heavy useless tongue and mouth for talking.
Severe Raynaud's (secondary as they call it).
Mild cold and hot burning sensation of forearms, back of neck, shoulders, face, etc. (hard to place since it is elusive, happens at night as if I am sensing the air around me, feels like icy hot was applied).
Rubber legs, MG waddle, shuffle run.
Dropping things.
Tripping on my own feet and carpets.
Weak and cracking voice (almost hoarse sounding).
Throat closing sensation like someone is choking me below adam's apple area.
Numbness in feet (could be from discs)
Tight unpleasant feeling around my diaphragm.
Head droop with painful neck.
Half smile (one side can't smile fully or snarls).
Difficulty brushing teeth (electric toothbrush a must).
Heat aversion of the worst kind (cannot get dressed after hot bath).
Oh, yes, vibrating sensation when lying down finally.
Brain fog (pretty sure this is related to high steroid dosage).


Gee, have I forgotten anything? I call this disease "comprehensive malfunction". We should have a printed list to hand to every doctor who sends us away without treatment to see how things go and ask how he or she would like to live with said comprehensive malfunction.

Funny you should mention biting your cheek. I did that today for the second time in about a week. I was kind of annoyed with myself, but never thought about it being an MG thing. My ocular problems are mainly on my left side--some drooping, double vision (both the binocular type the doctors expect with MG and monocular double vision/ghosting with my left eye after doing close work like reading or knitting for a while)--but my hip issues are on both sides. I've noticed recently that the muscles in my right arm seem tight and achy and wondered if that's a Mestinon side-effect. Is taking enough Mestinon for my left side too much for my right side? Or is that an MG thing, because sometimes it seems like my right arm is the weak one... I occasionally feel short of breath, but I've been blaming asthma for that.

Pat

Adding to the list: two moon diplopia--I can usually see just one moon if I look straight ahead, but from other angles, there are two--the one in my dominate eye stays stationary, the other moon wanders around trying to sync with the stationary one. MG entertainment :-)

esophageal difficulties ranging from the "stuck" feeling to esophageal spasm that can be mistaken for a heart attack to hiatal hernia with GERD. (I added a couple of links to the links group. 100% of MG patients in one study had esophageal abnormality although not all were symptomatic.) I've had all those, including the overnight observation for heart attack.

We are cautioned to exercise at the height of Mestinon when our MG is not under good control, but the same could be said about eating. Aspiration is one cause of death and transport to the stomach is not instantaneous, especially for us. Be especially careful taking pills, take them with plenty of water so if they get "stuck" they don't burn the esophagus and at night give them time to get all the way to the stomach before lying down. b.

I don't imagine it's comforting to know, Elinora, that I get a lot of brain fog and have never taken steroids... I think it's part of the MG... Especially when things get bad...
I am always running/falling into doorways, too... Maybe I am just ditzy? :) but I know it's weakness plus nervous system issues... Maybe some bad eye muscle control, too...
I do find the muscle twitches and tremors get better when my Mestinon dose is high enough.
Do the other (eye, coordination, extreme fatigue, choking, brain fog) symptoms improve with IVIG? I guess we'll find out...

Koev,
So far for me, IVIG has given me a much better life, but it is bumpy, it takes before it gives back and after some infusions I still have one or another symptoms and they are not always the same. After the first everything got better but the eyes, the second everything but the swallowing, the third, back to weakness (better but not as good as first go round) . . .to be continued (with prednisone drop and addition of Imuran, just to confuse things). b.

bweeds, thanks for posting those links about esophageal muscles! That was one of my first symptoms, months before I had any other noticeable symptoms: food sticking on the way down, the burping problem I mentioned in my previous comment, and heartburn at night. But then as soon as I began treatment and started taking prednisone, that gave me heartburn too and so I wasn't sure what was causing which problem. Plus, my esophagus may have felt weird just because there was a tumor the size of a grapefruit sitting on it. In fact, I don't think I've even mentioned these problems to my neurologist because I was used to it already by the time I started going to the doctor, so it's interesting to read that others have this symptom as well.