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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-16-2013, 03:08 PM | #1 | |||
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Hello Everyone,
I am a 41 year old woman in BC, Canada, who’s been experiencing intermittent, severe muscle weakness for the past 8 years, and as yet I have no diagnosis. I have a lot of the symptoms that go with MG, but have had negative antibody tests, including for MuSK, and a negative EMG, which was done while the weakness was in remission. All the other muscle testing has also been negative when I am not weak. The weakness has been coming on for 2-4 months, 1-2 times per year for the past 8 yrs. I first got weak in 2006 after a laparoscopic surgery to formally diagnose endometriosis, which I’d had since the mid 90s. I had a hard time recovering from the anaesthetic, with difficulty breathing, etc, and then was just stuck on the couch for over a month afterwards. Then I was tried on a bioidentical progesterone med to slow the endo growth, and on the 2nd day after taking it, my speech became slurred and I got too weak to walk, collapsed on the floor, unable to even lift my head. This has continued to happen, after each of four different hormone meds prescribed for endometriosis, a series of travel vaccines, a detox, a bad flu, and a course of antibiotics. The weakness comes on after I try moving around normally, gets worse, with slurred speech, resulting in collapse and also extreme thirst afterwards, weird muscle tremors here and there in my body before weak spells, heart palpitations, sometimes a metallic taste in my mouth, extreme thirst, and weird night sweats where I’d be just drenched, with a metallic odor to the sweat, to my nose. When weak, my bladder muscles want to give out too. When I try to push myself when weak, things go very badly, and I have had trouble breathing and swallowing too.. it's pretty scary when this happens. Also, the weakness gets much worse before my menstruation, and most often improves somewhat afterwards. Other MG symptoms I have are occasional ptosis, with left eyelid drooping, facial muscles very lax, and a positive response to mestinon. but no diagnosis, and the Dr starting to ask about psychological factors.. I really feel he is barking up the wrong tree here.. When I am well, I am very happy and engaged with life, but when this weakness and fatigue comes on, it is very stressful and scary. I’d love to hear from anyone who’s experienced something similar, or who has any ideas or suggestions for me. Many thanks in advance, and best wishes to everyone! Blessings to All, T |
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10-16-2013, 05:36 PM | #2 | |||
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You very well may have MG. You probably need the opinion of another neurologist. Several doctors thought I was crazy before I was diagnosed.
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Celeste |
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10-16-2013, 06:22 PM | #3 | ||
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I tested negative for everything except a single fiber EMG. Took two years and went thru 4 neurologists to get to that test! I would request SFEMG. It may not be locally available. I had to go 2 hours away to Chicago for mine. Best wishes to you!
Susan Quote:
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10-16-2013, 07:04 PM | #4 | |||
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I suggest you go to a neuromuscular specialist at a large teaching hospital. MG is so rare most local neuro have never seen it. Definitely ask for the single fiber EMG.
A hysterectomy brought on my MG. Surgery is often a trigger. How do you respond to the heat? Most MGers get much worse in the heat, even a warm bath. I can't even wash dishes or fold hot laundry. I get the profuse sweating when I am extremely weak. I look like I just washed my hair. It is like the profuse sweating before you pass-out. But I have never actually fainted. Although I have fallen several times. Have they tried Mestinon to see how you react? Good luck kathie |
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"Thanks for this!" says: | bizzymum42 (10-16-2013) |
10-16-2013, 09:27 PM | #5 | ||
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Junior Member
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Some of those symptoms are common for MG. Some of them don't seem so common (metallic taste) but this disease has all sorts of shapes and sizes. If you respond well to mestinon that's great because it doesn't help everyone. MG or not, perhaps just being helpful is a reason to take it.
One thing you didn't mention is that MG is especially visible with repeated muscle movement. Has anyone tried to measure your fatigue response to repeated muscle motion (over say a 5-7 minute period)? The SFEMG test does that with an instrument but the neuro docs often try to measure muscle fatigue 'manually' by asking you to move the affected area to look for fatigue buildup. Another test to try when ptosis is flaring is to put an icecube on your 'bad' eyelid to see if the ptosis reduces or disappears. All of that is good but you really need to see a neuro doc that knows how to diagnose MG. MG is not so common and even trained neuros seem to get it wrong sometimes. Good luck. I hope you have easy answers soon. |
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10-29-2013, 01:05 AM | #6 | |||
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I wish everyone the best in their healing too, and I look forward to sharing info on what helps. Blessings, T |
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"Thanks for this!" says: | cait24 (10-29-2013) |
10-29-2013, 01:08 AM | #7 | |||
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Junior Member
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Quote:
T |
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"Thanks for this!" says: | cait24 (10-29-2013) |
10-29-2013, 11:42 PM | #8 | ||
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Junior Member
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Hi, to start off, I'm not saying it's not MG, and I'm not saying it is this other idea, I have no clue. But what you are describing sounds a whole lot like a friend of mine who has MS. The pattern it sounds like you are describing, of relapsing and remitting, would fit with that diagnosis as well. I hope your doctors have at least done an MRI of the brain and C-spine before throwing out the psychogenic nonsense.
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"Thanks for this!" says: | cait24 (10-30-2013) |
10-17-2014, 04:12 PM | #9 | |||
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Junior Member
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Which makes me wonder if this is the antibody I might have. Specialist left it at no dx, "just come in" when I have weakness.. but only on his one day per week that he sees patients, if he has time that day, and without any mestinon so he can test me using other means.. which would make it extremely difficult to get to see him as he is a five hour trip away. When I don't have the weakness, I test fine. I only had noticeable ptosis once, took a photo and sent it to my specialist but he said he can't go on anything based on a photo. I had had a very severe reaction, prompting 5 months of severe disability, after some travel vaccines a few years ago. I have been quite well (fatigue, but mostly no weakness, hardly any mestinon) for the past year or so, but have been hired at a hospital where they are forcing employees to get the vaccine or wear a mask. Wearing a mask is very awkward in my position, and my manager has already stated, "well a mask wouldn't work." I really want this job, but really don't want to risk a relapse! Anyone have any thoughts/experiences they want to share on this? Thanks! Treena |
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10-17-2014, 08:40 PM | #10 | |||
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I just had a flu vaccine and it didn't bother me at all.
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