Could this be Myasthenia Gravis?
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 |
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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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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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 |
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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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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:) T |
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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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 :) |
I just had a flu vaccine and it didn't bother me at all.
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Hi, TreeLover.
The metallic taste reminds me of hemochromatosis. Have you been tested for high iron levels? Extreme thirst can be a sign of either diabetes mellitus or diabetes insipidus. It might be a good idea for you to see an endocrinologist for a general evaluation. Night sweats could be caused by a number of hormonal issues. Have you had basic testing done, such as thyroid, B12, metabolic panel, CBC, etc.? You might have more than one thing going on. Some of it sounds like a drug reaction. People with hemochromatosis can have liver issues and not be able to metabolize drugs, making them sicker than other people when they take them. Please get to your internist to talk to them about that soon! Annie |
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I have had all those panels done, but nothing showed anything out of whack enough to diagnose anything.. just the slightly elevated bilirubin for a while there, which does indicate some level of struggle for the liver. I did have an energy medicine practitioner (NAET) diagnose hemochromotosis, but the GP couldn't find it. Frustrating.. But on the bright side, I'm doing much better now.. not taking any meds, only homeopathics, and doing Kundalini yoga to stay well. I do my best to live as cleanly as possible, avoid food chemicals, wheat/gluten, and eat mostly organic. This all seems to be working well for me so I will stick with that, and meanwhile see if I can get tested for that other antibody.. has anyone else had that test done? Treena |
I wonder if you have heard of something called "periodic paralysis". It came to my mind when you mentioned having difficulty with anaesthetics. Since PP is a channelopathy, anasthetics (especially depolarizing ones) can cause a severe reaction.
It's on my own short list of things I'm being tested on. The basic ways to get tested on it are genetic (only the 6 most common genes are tested, usually), and more dangerous ways (like having an IV of sodium, potassium or glucose (depending on which type you have) and seeing if that triggers an attack) The big difference between it and MG is that MG is clearly linked with weakness WITH exertion, while PP is linked to weakness AFTER exertion. This sort of confuses me, though, because (like MG) the disease can take a lot of different forms and I've seen some references to "after" being anywhere from seconds to hours. How can you tell the difference between weakness with exertion and weakness after if "after" can be a second or two of relative rest? One thing that a PP attack can do is be "abortive", which is where the attack doesn't really end and can stay with you for months of fluctuating weakness. This sounds like what you had with the anaesthetics. |
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Again, I don't have a diagnosis myself, but I had several months of severe disability following a TDAP vaccine (though I have no idea if they are related, since my health was slowly declining up to that point anyways). Not sure how that compares to other vaccines. At first I thought it was unrelated, but when my doctors began pursuing an auto-immune theory it sounds like it might wake up you immune system (at least in some people). |
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