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...
Good evening, All.
Im hoping for some kind replies. I've had mysterious symptoms come and go since the fall of 2014 and no one has figured it out. Not a pleasant place to be as I'm sure many of you know. Initially my neuro mentioned MS, but that no longer appears to be the case.
After a period of 7 months or so pretty much symptom-free, things are back. The last episode (fall 2016) brought muscle weakness in my arms and in my upper back. I could hardly cut up potatoes, for example, prepare a meal because the weakness was so bad. It stopped after 2-3 weeks.
In the spring of 2015 things were at their worst. I had episodes of leg weakness where just the thought of walking to my car in the parking lot at work exhausted me, or running to the store to pick something up. I also had episodes of severe pain in the lower back and hip area, and sometimes thighs, that was also unexplained by MRI. Also aching of my limbs. Terrible.
Now I'm having strange weak feelings that come and go in my ankle/very lower leg area and my wrists/lower arms. The thing is, I wake up with it sometimes, and I understand that with MG it improves with rest. Now I'm again experiencing that weak muscle feeling in my mid-upper back, when I say this I mean the muscles below the blades. I was doing my hair last week and after my arms and wrists felt very tired, and my back. Then it got better.
Now my left eye looks smaller than the right. The lid is clearly lowered and shrinking the look of my eye. At the moment, I can actually feel it.
When I wake up they both look small, but then the right one improves but I suspect it's still smaller looking than normal. I first noticed this when I saw a photo of myself taken last year with a group of family. My eyes looked tiny! It made me look like my face was puffy - maybe it was - but never have I seen myself look like that in a picture. I was diagnosed with dry eye hot long after that, and my eyes had been bothering me from that, but it's not so bad lately at all.
I also get stabbing pains, which were worse in 2015, but I still get them on occasion. Usually they're in my hands, feet, thighs.
Also, I've had a few days where I feel it's hard and tiring to breathe, but I thought it was allergies. It feels like I wish I had an inhaler when that happens.
Does this sound familiar to anyone, and if you have weakness, does it come and go and differ one month or year to the next? Is it only after exertion or can you also wake with the sensation?
Due to my eye, etc. I'm wondering if anyone thinks it's worth it to be checked for MG. This is one thing that has not been looked into. I do not have double vision, except for ghosting when I look at lights which I'm told is the dry eye or the early cataracts I have. Ugh.
Do you always have double vision or can you just have a drooping eyelid?
Sorry for all the questions, I'm just wondering if this sounds familiar and if MG is worth looking into.
Thank you!
Sorry to hear you are having so many problems. Some of your symptoms sound like MG symptoms. MG does have different effects on different people, and symptoms that overlap with many other conditions too--making it hard to know for sure.
I was diagnosed first with what is called the "ice pack test." When my one eyelid was drooping, the doctor had me hold an icepack across my eyes for about 2 minutes. Then taking it away, the eyelid no longer drooped for a few minutes. I then too a blood test for ACHR antibodies that came back positive, a clear diagnosis.
You might want to try the icepack test yourself, and if it clearly makes the eyelid droop go away, ask your doctor to try the blood test (or ask anyway).
Most of the time, my MG showed itself as getting tired rapidly after repetitive tasks. My doctor held my hands and we pulled against each other. My pulling lasted only maybe 10-20 seconds before I got weak and she could easily outpull me after that.
This weakness after a short time showed up with walking, chewing, talking, even breathing -- if I did something strenuous, I got out of breath quickly.
Hope you find out what is wrong
Good Luck
Russ
I tried the ice pack test with an eye mask that you can put in the freezer. I'm not sure that it's cold enough bc it didn't stay real cold for long. I couldn't tell if it helped. Perhaps I need a real ice pack. Also, I'm afraid I'm going to freeze my eyeballs!
This week was hard at work with a lot of time with my arms to the keyboard. Then yesterday I did some housework - vacuuming and dusting...and another hard day at work. Tonight my arms and hands feel exhausted and also feel a bit of that in my lower legs/ankles. One day during the week I was sitting on the d,our for a few and I had to lie down bc my back muscles were exhausted and started to hurt. Then I passed out asleep. I passed out asleep this evening from the physical exhaustion and woke up feeling the same. I haven't had these symptoms (at least to this degree) since Nov.
I have had weak hands or wrists for 20 years where I can hardly open a bag of chips, and sometimes buttons or anything requiring dexterity is difficult. Hmm.
My arms barely have the energy to type this on my iPad.
I had a regular EMG last year which was normal. The neuro said that meant that my issues are CNS related. I know there's a better EMG for MG though. I think I read the regular one will often be normal with MG.
OH - for that balance test with your arms out and eyes closed I was tipsy. Also, he detected a weakness in my left arm from a test where you roll your arms. These were both I believe in 2015.
Is MG worth looking into for me? Should I go straight back to the neuro or should I try the PCP and request the blood work? What about my ice test...it wasn't really ice but these little beads in a mask. Btw, the usual things have been ruled out and this never came up but I came across it recently with the muscle thing returning and got to wondering...especially after the severity of it that I recall with my mid-back muscles and arms last fall.
I hope I make sense bc my arms are tired typing this - I'm exhausted. :(
Thanks so much to you both. Have a great weekend.