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Old 10-16-2013, 03:08 PM #1
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Default 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
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Old 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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Old 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

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Originally Posted by TreeLover View Post
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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Old 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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Old 10-16-2013, 09:27 PM #5
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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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Old 10-29-2013, 01:05 AM #6
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Quote:
Originally Posted by gr8ful View Post
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.
Thanks very much everybody, I really appreciate your thoughts and support! The MG specialist I saw is at a teaching hospital in a large urban centre.. he is the guy one would want to see, apparently, who diagnoses the difficult to diagnose cases. Where we left things is that I will try to get to him if I get weak again so he can do the manual muscle tests and look me over to see if he can "tell" it's MG, which seems a bit contradictory to what he said recently, that I don't have it based on all negative tests so far. I haven't tried the icepack thing yet, but the mestinon fixes the ptosis. I had taken a photo of myself with ptosis via my computer camera and showed it to him, but he seemed very dismissive and even suspicious of it. He said he's had lots of people try to "prove" to him they have MG by showing pictures etc. I guess he has to be careful. So that's where thing are parked.. I am going to keep trying to heal myself with nutrition, meditation, kundalini yoga etc. I figure that if my brain/body/system got itself into this, it should also be able to get itself out. I just need to persevere to figure it out and not give up on getting better. I've come across some interesting articles on things like candidiasis and celiac disease being linked to autoimmune conditions so I am going to making some dietary changes and see what happens.

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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Old 10-29-2013, 01:08 AM #7
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Quote:
Originally Posted by cait24 View Post
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
Hi Kathie I forgot to mention that heat does make it worse. If I'm in a weak "zone" I can't take baths or I can go into a full on flop, and if it happens in the summer I pretty much can't do anything, have been stuck on the couch or in bed and needing full support. Well, that was before I had access to mestinon. I'm hoping never to have to experience the worst of the weakness again now that I have that stuff!

T
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Old 10-29-2013, 11:42 PM #8
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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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Old 10-17-2014, 04:12 PM #9
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Quote:
Originally Posted by Geode View Post
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.
Thank you Geode. I was tested for MS and ruled to not have it in 2012. I have since tried Mestinon and it works. I had tested negative for antibodies. Just recently saw this: http://www.sciencedaily.com/releases...1111112641.htm

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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Old 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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