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Old 12-29-2019, 12:39 AM #1
Snoozebutton Snoozebutton is offline
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Question Hi! New here. Anyone NOT have ptosis/eye involvement?

Good evening!

I'm new here and have a few questions and hoping someone can help. I'm awaiting MG test results (8 days and counting).

Is there anyone who has MG but without the drooping eyelid(s)? I have what I thought was a drooping eyelid, but went to the eye doctor and she did the cold test and the one where you look up for 2 minutes and said nope.

My main complaint at the moment is fatigable muscles (bilateral). Like right now I'm having to hold my arms up a bit to type on my laptop which is positioned too high and they're getting tired. It's mainly been my arms, but in the past I've had weeks-long episodes of leg weakness as well, to where just the thought alone of walking to my car in the parking lot at work wore me out, or where I'd have to forgo a trip to the store. My ankles are also involved on a more consistent basis like my arms.

My back muscles also are easily fatigued, at the sides of my torso along the back. I never realized how much those are used - like when cutting potatoes or mopping the floor - they get weak along with the arms.

In the summer I feel like I'm being tortured because I have extreme fatigue all day (sleepy), and then the muscle fatigue gets worse to the point where I mess up my typing (fingers), my lower arms and legs often ACHE, and just sitting makes my legs feel weird/tired. When I get up from sitting i'm bent over. When the temps begin falling to the low 80s, I'm like a new person, but I do still have the muscle fatiguability upon exertion. It's hard to mop my floors, or vacuum my couch - ouch. Once i was painting a shelf and I suddenly had to stop because my hand/wrist eventually just gave out. That was in February when it was cold.

I do recall getting very noticeably tired of chewing on occasion.

Is it possible to have this for a very long time but be "stable"? I"ve had weak hands/wrists and seemingly ankles for perhaps 20 years, and always thought it was due to nerve damage from a neck herniation I had back then, but an EMG (regular) was done and the neuro said no - it's not your neck. This weakness made me unable to bowl (drop the ball), play tennis, or basketball very well anymore, and I was always pretty athletic. I also can barely open a bag of chips.

Like most people I've had all sorts of tests and i gave up for 3 years but now am back at it because i feel i'm getting worse as far as the muscle fatigue. My pcp mentioned mg and ordered the tests.

Is it true that there aren't too many other possibilities when it comes to muscle fatiguability? I need a dx because being single I worry what happens if I can't work and I don't have dx? I'm the only one paying the bills. I also get occational stabbing pains and have a history of other parathesias as well as episodes of hip and low back pain (excruciating). If it's MG i certainly don't want to be a sero-neg ughhhh. If so I guess back off to the neuro I go.

I"m very sleepy at the moment so i'm sorry if i'm all over the place. I welcome any input on my symptoms or questions.
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Old 12-29-2019, 02:02 AM #2
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My Mood: Hi! New here. Anyone NOT have ptosis/eye involvement?
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Hi Snoozebutton

Welcome to NeuroTalk .

My understanding is that ptosis is often associated with myasthenia gravis but this is not always the case.

The information in this link may help you with this.

Ophthalmologic Manifestations of Myasthenia Gravis: Overview, Patient History, Physical Examination

Best wishes.
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Old 12-29-2019, 11:27 PM #3
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Hi. I havenít had much eye issues with my MG. That said, I learned a trick here. When you think your eyelids are drooping, have someone take a picture of you, or take a selfie in the mirror. If they are indeed drooping, show the photos to your doctor. Jim
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Old 01-06-2020, 07:44 PM #4
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Thank you both for the helpful replies.

The eye doctor did the cold and the test where you look up for 2 minutes and said no change. Are those tests always effective? I definitely see that it switches eyes at times and is worse when I haven't slept enough. I do have photos I've taken as well.
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Old 01-06-2020, 11:28 PM #5
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I have never had the Cold test. Iíve only had to look up for a set period of time, or squeeze my eyes shut while my neurologist tried tries to open them (pressing just below my eyebrows).

Have you seen a neurologist or a neuro-ophthalmologist? They may be more helpful. You donít specify what kind of eye doctor you have seen. Sorry Iím not much help. Jim
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Old 01-06-2020, 11:43 PM #6
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Hi Jim,

Thanks again. I just went to the regular eye doctor for an exam for new glasses. This was after my PCP mentioned MG and ordered the blood tests, which are in the negative range. I realize that doesn't rule it out, however. I have been to neurologists but not since 2016 and none mentioned MG or thought of it. I have a referral in hand to a new one and I will see him this year. I'm starting fresh though with my $2K deductible so I'm not sure what o can afford in the way of further testing until I pay down bills from a fall in Oct. I do also have balance issues which seem to be from ankle weakness. I hope you are doing well and thank you for responding to me.
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Old 01-08-2020, 02:14 PM #7
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I have no ptosis, and only occasionally a bit of double vision. Except for your experience with heat, my symptoms sound an awful lot like yours. My lack of ptosis really delayed my diagnoses. I have repeatedly tested negative for all the MG antibodies, but I got diagnosed by a stimulated SFEMG ten years ago.

Abby
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Old 01-13-2020, 11:42 PM #8
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Thank you, Abby, for your reply.
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