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Old 04-19-2018, 12:04 AM #1
winic1 winic1 is offline
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Default Is this normal for an EMG?

Went for an EMG today, big name doctor at a big name place.

They started with the shocks on my right arm. Several test shocks to set the strength. Then 10 rapid fire shocks in a row. Relocate some things. repeat shocking.

Then they taped my fingers loosely together, and had me strain against the tape for a full minute to tire out my muscles. But then they had me rest it, relaxed, for at least another full minute before repeating the shocks. What good is tiring it if you then rest it before testing???

Then they did my face and around my eyes, with the shocker at the back edge of my jaw/cheek. And moved things and repeated. And had me squeeze my eyelids shut as tight as possible to tire them, but then had me rest them a full minute before shocking again. Then moved the electrodes and shocked again. So, that was four full rounds on the right side of my face.

Not seeing any difference, they then repeated all four rounds on the left side of my face. about 3 shocks to set the level, then the ten in a row. move things. repeat. move things repeat.......

Then they redid it again on my left arm, four rounds.

Is it really reasonable to expect to find different responses on different, adjacent, facial muscles? if nothing is showing the desired responses (mg symptoms), do you really keep trying and trying? do you really do the left side if you get nothing on the right side???

From what he said after doing this to me, I now strongly suspect he was just collecting data for his research center. He very clearly has no concern at all with figuring out what is wrong with me if it isn't MG, which is what he is leaning towards, although he won't say until I get a couple more blood tests done (LRP4 and another one). Then I am supposed to come back for a summary visit where he will tell me his declaration. Asked, if the last blood tests are negative, is there something further to investigate, will you still try to figure me out, or are we just done? and he refused to answer. Said I had to wait until the final visit. (which ain't gonna happen. I am done with him. Too much more went on to explain here, you would understand if you were there and heard it.)

But I am really wondering about all the repeat runs on the EMG. No one has ever done that to me before. Is it really reasonable to keep trying different, adjacent muscles to try to get an mg-like response, to try left and right sides over and over, or was he likely working on his own agenda, not my health?
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Old 04-19-2018, 05:51 PM #2
ErinBear ErinBear is offline
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Dear winic1,

Yes, when I have had SFEMG testing, they have generally done repeat testing in areas, and they have usually done both sides of the body. The doctor was not just torturing you, or trying to get information for research. It's very hard when they take so long with such an uncomfortable test, and they can't give you the results at the same time. Every time I've had an EMG done, it's been that way, and I've had to wait for the results to be processed. It's always taken much longer than I wished, usually at least a couple weeks, I think.

Whether you go back to see this doctor or not is your choice, but please don't rule that out the doctor on the basis of this test. These tests are always long and uncomfortable, I'm afraid. If this doctor is leaning towards an MG diagnosis, which you've been trying to confirm, maybe it is worth trying to go to the followup appointment even if you wish he had a better bedside manner? You can may want to find out what the SFEMG test results are before you stop seeing this doctor, if that is what you decide to do. That could be useful information for you.

Take care,
Erin
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AnnieB3 (04-29-2018), pingpongman (04-19-2018)
Old 04-19-2018, 10:27 PM #3
winic1 winic1 is offline
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This was not an SFEMG. He did not use a needle-type on me. It was stick on electrodes on my hands/arm, and the shocker held on up by my elbow, that looked like what you attach a nine-volt battery to, only bigger. Same thing on my face, stick on electrodes around my eye, in several positions, then on my nose, with the big shocker thing held against the back of my jaw/cheek, near my ear.

On the fourth round on the first side of my face, he said, "we're running out of places to try". I said, "Good!".

Resident was actually doing the test. Big name doctor was standing off behind, leaning against the wall, watching the screen from over the resident's shoulder, telling him where to try next.

And somehow, they left a bunch of scrapes wherre the shocker was, on my right elbow. I have a series of small cuts about a half inch or so apart in width, about where either side of the thing was.

He did give the results, right then. Said he wasn't seeing anything to indicate MG, which is what he had already said and decided after the initial visit, with all the 'push against my hands' stuff. But for the first visit, they told me to take the mestinon before coming, and time it so it was at full effect. Mestinon works wonders for me. So, yes I was able to push and hold. No, he did not see much in the way of signs of weakness. BECAUSE I WAS ON MESTINON AT PEAK TIMING AND THE STUFF WORKS WONDERS FOR ME. But he discounts that and says I don't show much in the way of MG signs. Even still, I was having to stop mid-sentence and catch my breath the whole time. We even talked about that. yet, in the visit notes, he says I had no shortness of breath and spoke in complete sentences without trouble. And he wrote I walk steady and normal and without assistive device. No--I use a cane and do not walk normally and am not steady. I have even fallen, last time nearly breaking bones as I was at the top of some stairs (and landed on my face by the bottom.)

When he referred me to the neuro opthalmologist last fall, I had them read me the referral. The words were "I really don't think there's any signs of MG, but tell me what you think." So the n-o did not do more than wave his finger left to right, top to bottom, and towards my nose, ONCE each direction, put ice on one eye (that was not having ptosis problems at the time, or ever) and declare No, no MG. Seriously, that was his whole exam of me, other than all the expensive photos and visual field tests he had his people run (which were repeats of the same tests I brought with me from my several ophthalmologists, none of which he paid any attention to, nor their notes.)

The come back for the summary is after I get the LRP4 test and one other he wants, done. It took me 14 months to get the MuSK approved. Absolutely no help from this facility, their Authorization department only does big things like MRI's and CT's, nobody does bloodwork even if the single test does cost $1700. Now, I have to get the LRP4 approved before I can get it done. THEN I am supposed to come back so he can make his grand pronouncement, even tho he has said he really doesn't think it's MG. And several times started to say that he didn't think I should be on mestinon even tho it makes a huge difference in me. A difference that people who barely know me have commented on, it's so obvious. But I don't have a positive lab test of any kind. And he didn't see signs of MG because he only looked when I was on full dose of mestinon. And ignored and denied the signs that were there, like being so short of breath it interrupted my speech.

All indications say he is going to declare that I don't have MG, and that my regular doc should take away my mestinon, even tho it has a massively positive effect on me (which he does admit to.) WE asked, okay, if it 's not MG, then why does the mestinon give such positive results? What else does mestinon treat? And he fumbled and evaded and talked circles and diversions, and my husband kept putting the question to him, and finally he said, "it treats a number of other things....such as low blood pressure...and, um....um...." And hubby went, "Really?" in an incredulous tone, and doctor just looked at him, embarrassed face, mouth open with nothing else to say.

I asked, more than once, well, if it isn't MG, then what is it? If it isn't MG, if the last tests are negative, then what comes next, is there something to proceed with looking at, or am I just done? And doctor refused to answer. Would not even say whether there was more to look for, other things or whatever, or if it was the end of the road with him. REFUSED. Did repeat, "I am just a consultant" and "Well, you came to the Myasthenia Gravis center" so clearly asking about anything else is out of line. We then asked if he could recommend a doctor or place to go to get further investigation if it is not MG. Again he repeated the "I am just a consultant, and that is not my responsibility" to us. Unreal.
I will only get an answer to whether there is anything more to be done, or to look for (as in other causes) after I have the last two blood tests done, and he gives me the summary. Well, I already know the results and his thoughts on everything up to now. He told me the results of the EMG. He has said his impressions of the initial exam, AND I have the visit notes he wrote up and had in my file. I have the results of the blood tests. I have what he told the neuro-oph, 'i don't think so, but tell me what you think'. So, why should I waste the over 5 hours it takes, between driving time and time sitting there, which costs us at least 1/2 a vacation day from my husband's job so he can take me, to be told he doesn't think it's mg and go away? I know that already.

And when he sends his final letter to my regular neuro, saying he, the big name MG guy, doesn't think it's MG (because he only wants to see a positive lab report telling him so) and she should stop my mestinon, then what do I do? It works. Without it, I can't even brush my teeth without leaning over so I can rest my arm on the sink since I can't hold it up long enough to brush, in fact, I have to rest my whole body against the sink to stand there long enough. I can't keep my arm up long enough to brush out my hair (which I had to cut short because I was too weak to take care of it) without the mestinon. I can't talk. I can't do anything because it is too hard and I am too weak and need to spend more time resting than doing, without the mestinon. So, what do I do, if I let him finish me off and send that final letter and take away the only thing that works for me?
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Old 04-19-2018, 10:50 PM #4
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I can go to New York City. It is within range. It means 4-5 hours of total travel time, round trip, plus the time in the city itself, but it is doable. I don't need this buttwipe at Yale (you had to be there, there was so much more unbelievable stuff with him. My husband, who is the most non-confronting guy ever, was even upset and arguing and nailing this guy for what he was saying.)

I just have to do the research to narrow it down to the best choice among the many places in NYC. But having recently had eye surgery, on top of all of the vision problems and dysfunctions I already had before surgery, I just cannot do it right now. I just can't. It will have to wait. Maybe it's not MG, but it's something. I need to find someone who is willing to figure it out, someone who is willing to HELP ME, not just serve their own interests.
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Old 04-19-2018, 11:09 PM #5
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I really feel bad for you. I have decided a lot of Neuro's are not as smart as they think they are. This is a very complicated disease. I will not tolerate a smart *** neuro. I have a neuro-muscular that I saw. He was on the research team that discovered the antibodies. I don't see him anymore because he was a smart ***. One trip he asked me if I knew what day it was. That was my last trip.
Keep hunting!!!
Mike
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Old 04-20-2018, 11:16 AM #6
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Dear winic1,

You may be surprised. When I saw a neurologist at a well-known teaching hospital near me, he said I did not have myasthenia gravis according to the test results. I, too, was worried he would tell me to stop taking Mestinon. However, he said to keep taking it, because it was clearly useful to me and it is a fairly low-risk medication.

Is there a myasthenia gravis support group near you? You might get in touch with them, and see if there are any doctors in your area that treat patients who have myasthenia-like symptoms but have negative test results. I am in that category. I have an excellent neurologist now, who is willing to treat me as a myasthenia gravis patient even though my test results have been negative. She has seen me at my worst, in the ICU, and believes I have myasthenia gravis. This is a regular neurologist in my local community, not at a teaching hospital.

I send you best wishes, and please take care of yourself and hang in there.

Take care,
Erin
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Old 04-29-2018, 08:19 PM #7
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Stick-on electrodes could be an RNS or the magnet type of SFEMG that they use in Europe. If you get a copy of the results, you will know. If you don't have copies of all of your records, please contact the medical records departments and have them sent to you. There are things doctors do not tell patients that are in the records.

This doctor "might" have been trying to fatigue muscle groups, or to find a better muscle fiber in the area he already tried. Try not to read into things so much.

Where was this current doctor located? Where else have you been? We can hardly recommend anyone without knowing that, and how far you can go for care.

The point of doctoring is not to say what you don't have, but to figure out what you DO have! No one appears to be doing that for you, for which I'm sorry.

Mestinon can treat low blood pressure, such as that in POTS patients. HOWEVER, you don't have low blood pressure (right?). What you have is muscle weakness. And Mestinon only works on those who have weakness as a result of malfunction in the neuromuscular junction. As I said in my other post, that would include a CMS and LEMS.

This neurologist is not a pulmonologist, and has no means to assess your shortness of breath. You need a pulmonologist and a cardiologist. There are causes for shortness of breath that only they can assess.

There is no point in arguing with doctors. None. Open-minded, kind ones will help you no matter what. Arrogant ones won't change who they are only because you want them to. I understand your frustration, but making a doctor the enemy is not a great idea.

I wish there was more any of us could do for you. Maybe this doctor will have an answer for you. Who knows.


Annie
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