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Old 01-13-2011, 10:21 AM   #1
pingpongman
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I have a question about this test. My sister had this test done at UNC last Tues and the Dr said he would call her with the results by that Fri. Well we haven't heard a word from him. He also took some bloodwork and had some photos of her "sagging" face that he was going to show a Neuro-opt. He was most puzzled by her "sagging" face. Said he had never seen this before. I thought the single fiber results were instant. The Dr himself conducted the test.

My sister said "What really puzzled him was how I was having (haven't had one in last week or so!) these episodes where I could see my eyelids falling down. Here's the kicker: these episodes would only last for 20 or 30 seconds and then ease off. Now this is in addition to my eyes dropping at the end of the afternoon when I get really tired. Left eye drops more than right. But he said that he had never heard of these sudden short "episodes" occurring with MG. The first time it happened it scared me slap to death!"

Thanks,
Mike
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Old 01-13-2011, 11:26 AM   #2
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I have had 2 SFEMGs at this point. My current yucky neuro did one. She did it on my strongest fore arm cause that was convenient for her chair. She knew right away. Rather than trying a differnt location she kept trying the same spot torturing me for at least 60-90mn. The one at Mayo were ready quickly too. I dont know why a delay for you unless there is something puzzling in result.

I thougth the face droop thing was common. I sure have it. It was one of the things my youngest daughter complained about early in that she would say now you have to SMILE for the kids now mom. That surprised me as I thought I was. But I began to 'try' harder, work harder to smile. It takes more work to get a smile out of my face. The bad thing is that it can come across as always sad or mad and you arent really. This is great for the docs that want to peg you as mental case not MG.

Could you call and ask for results or request the written report. I do request.

Annie59
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Old 01-13-2011, 11:58 AM   #3
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Hi Annie,
My sister has this droopy face sometimes early in the morning and it only lasts about 20-30 secs. This is what is confusing the Dr. She has the other standard symptoms tired late in the day, droopy eyelids but no double vision yet.

Yes I would have called too. My sister is not as aggressive as I am.
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Mike
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Old 01-13-2011, 03:31 PM   #4
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Mike, Ask your sister to keep a diary of exactly when these episodes happen. For example, after eating food or after just waking up or does she smoke and is it after a cigarette or is she on any drugs and is it after taking them, etc.

If someone has been sleeping all night, that might be just enough to gain some acetylcholine/strength back. When they wake up and do a little thing, it's possible that would be enough to make them weaker. If she isn't on Mestinon, then her muscles need acetylcholine and aren't getting what they needs.

There have been examples of people who clench their jaw or face or have rapid eye movement while sleeping who wake up with ptosis. It's all about what the muscles are up to!

After an EMG, which is like inducing exercise, it would not surprise me at all that the most obvious sign of weakness - facial droop - would occur. Those facial muscles are often the ones to "go first." My facial muscles are sort of my barometer of how the rest of me is doing.

Sometimes doctors don't "see" facial drooping because they don't bother looking for it or they don't see it "in action." I had MG my entire life so I didn't realize that my droopy eyelids/eyebrows were a problem. I thought they were my normal until I took Mestinon and it was like a facelift.

Your sister needs to LEARN how to at least be assertive. With MG, she has to be her own best advocate. These signs of facial drooping, etc. are important for her to be aware of, as is the bad breathing signs. Because if she is having sudden episodes of weakness, a huge warning sign for MG, then she may be on her way to a crisis.

Any sudden weakness could mean that there is generalized loss of acetylcholine in the body (i.e., generalized weakness). Right before my crisis, I had these odd, short-lived episodes of sudden shortness of breath. After a bit of resting, they would go away. Those are always warning signs of MG getting worse. I had about six or seven of them within the three months before my crisis.

UNC is notorious, BTW, at not getting back to patients right away. Sad but true. It's not because they don't care but because their neurologists are professors, clinicians, testing practitioners and so much more. And it takes two hours to analyze those SFEMG results!!!

You know why doctors haven't "heard" of these stories? They don't hear them. They ask patients basic questions, do a clinical exam where they "feel" for weakness and then send us off for testing. I have always thought photographs, pulmonary function tests and LOOKING should be a greater part of an MG diagnostic process.

Please tell her to take it easy, especially out in the cold weather. This year has been so cold here and my MG is tanking for the first time in the winter.

If she wants to talk, please encourage her to come here! She needs support. You're a great brother!

Annie

Last edited by AnnieB3; 01-13-2011 at 03:39 PM. Reason: Can't spell while hungry.
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Old 01-13-2011, 03:47 PM   #5
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About the SFEMG--the test collects data, and then the data needs to be analyzed. The first two times I had it done, the doctor took the needles out and had me wait while he did the analyzing on the spot. The third time (the one that got me diagnosed) the doctor (a different doctor) saw so much "jitter" that it was clear to him that the test was positive, even before counting it all up. So he dismissed me and did the counting later.

I'm pretty sure I have that right. It explains why sometimes you get results on the spot, and sometimes you have to wait for them.

Abby
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Old 01-13-2011, 03:52 PM   #6
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Hi Annie,
During her exam and tests they couldn't get her face to droop but as things happen the next morning sure nuff it drooped while putting on make-up. She got a snap shot and took them to the doctor. He was shocked and wanted to send copies to a neuro-opt. She has the normal droop in her eyelids late in the day but these facial droops occur at anytime but lasts for about 20 seconds. Which I thought was strange.
I want to thank you for your thoughts and advise. My sister is a very shy person just the opposite from my other sister. I talked to her a few minutes ago and she promised to call his office. Heck I would have called last Friday.
Thanks again,
Mike
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Old 01-13-2011, 04:02 PM   #7
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Mike, I have this godawful comparison of "my two faces" that I have put in my book and an even worse one I couldn't bear anyone to see! They don't even look like the same person. If someone doesn't see BOTH photos, they can easily think one or the other is normal.

Since your sister has modulating antibodies only, she may be an odd MG duck like me. So journaling may be the one way for her to figure out how her particular MG "acts." After a while, she will know but since it's so new, she needs to really think about what is going on.

I'm glad she is going to call. I'm like you, very assertive. Your wife seems to be like that too. You are very lucky.
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Old 01-13-2011, 04:32 PM   #8
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Annie my wife is a life saver. She seems to know more about MG than the local Neuros. She goes in with me to ALL my exams and demands answers.

I have a question relating to me. I am currently on 360 mg of Mestinon (time release), 30mg of neostigmine, 150mg imuran and I seem to be getting weaker. For a while I thought all this medicine was doing nothing till one day I missed one of my 180mg of mestinon and my droopy eye lid instantly drooped shut. So I now know that it is helping some what but this Imuran dosen't appear to be doing anything. The only time I saw improvement was when I was on prednosone but that caused me to have an attack of Diverticulitis and spent 5 days in the hospital. I guess my question is will this imuran do me any good or should I go for IVIG?
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Old 01-13-2011, 04:36 PM   #9
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Annie I gorgot to tell you my sisters last bloodwork came back negative. So first test was positive and second was negative. Is that weird or what?
Mike
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Old 01-13-2011, 04:45 PM   #10
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Mike, The blood tests vary. Some antibodies circulate and some stay in the tissue, destroying our neuromuscular junction! It also depends upon what lab ran the test. Was it the same one both times? It doesn't mean that the first one wasn't valid. She should get her test results. Why? Because there is a wider normal range with modulating antibodies (0-19). Even when my test is "negative," I still have antibodies on the higher end. Trends in tests are as important as absolute numbers.

Mestinon Timespan can be useful but you have to be careful with it because how much it "puts out" at any one time is variable.

Did they do the TPMT test on you? If not, they should have done it before you even began taking it.

http://www.labtestsonline.org/unders...tpmt/test.html

Imuran can take longer to kick in than say Cellcept. Everyone responds to drugs differently. Some people do better on IVIG or plasmapheresis. They can now do subcutaneous IVIG, which has fewer side effects (though not benign!) and you can do it at home (through Walgreen's Specialty Pharmacy, IVIG called Hizentra).

How long have you been on Imuran? Talk to your neuro again! It's an art form figuring out what works for you or not. It can take a lot of trial and error.

I wish I had a husband like your wife, if you know what I mean.

Annie
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