Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everybody! I know I promised to write this earlier, but, here goes! Hopefully, there will be something helpful for someone else in my experience. A lot of the info I will share was explained to me by Dr. Weinberg's assistant while we were waiting for him to arrive... and represents my understanding of what she shared.
My SFEMG was performed by Dr. Weinberg at St. Elizabeth's Hospital in Brighton, MA. Dr. Weinberg is an experienced MG expert (more than 30 years working with MG) who runs is own EMG clinic and performs his own SFEMG testing with his own two hands on the patient and his assistant (who has been doing EMG's for 38 years) to operate the machine(s). Even though he has decades of experience, performing an accurate SFEMG is so intense/demanding that Dr. Weinberg performs only one SFEMG a day, two separate days a week.
Dr. Weinberg does not do an SFEMG on any body part except for the right eye. So, even if the patient's left eye is the droopy one, the right eye is the one that is tested. Even if the eyes do not droop, I believe that the SFEMG would still be conducted ONLY on the right eye. This is because with MG, the abnormalities at the neuromuscular junction that cause weakness are the same in all of the voluntary muscles, regardless of whether that muscle appears weaker than others. Hopefully, I got all of that right!!!
The goal with my SFEMG was to obtain 20 clean recordings of 20 seconds in duration from various muscles around my eye. I am not clear as to whether or not those recordings had to each be of a different muscle fiber or not, but he did repeat recordings that did not come out well and/or that were duplicates of other recordings. It took him at least an hour (or more) and 25 to 30 tries to get the 20 clean recordings of 20 seconds in duration.
A lot of fishing around was required to fine tune the location of the electrodes... to find the best "twitch" and to get a clean reading. While a recording was being made, Dr. Weinberg explained that nobody in the room was to move a muscle or to speak... not just ME, but also Dr. W and his assistant... during the twenty second recording. It was extremely intense... even for this renowned, highly experienced MG expert to perform the SFEMG. This does not match with some of the things other people have shared about their SFEMG's.
Dr. Weinberg had his left hand across my forehead the whole time, and used his right hand to adjust the needle electrodes. By the way, it did not hurt any more for him to insert the electrodes (which he did very fast) than it would when you get a flue shot. Needle electrodes were inserted in three different places. The only discomfort was from his fishing around for a better signal and having my eye twitching endlessly in very familiar ways, albeit more intense. I also had a surface electrode of some sort taped to my chin (and maybe another one above my mouth or on my cheek?).
Anyway, my guess is that the way Dr. Weinberg performs his SFEMG testing is not what some of you guys have experienced. To me, the takeaway from my SFEMG experience is that if it was this intense and this difficult for Dr. Weinberg to get the 20 clean recordings he requires of himself... and from a fearless patient... how in the world can someone inexperienced make a definitive proclamation that someone does NOT have MG, nevermind obtain 20 clean recordings!!! Even if my recordings had been normal, Dr. Weinberg would NOT have told me that I do NOT have MG.
Hopefully, I have remembered everything I wanted to tell you... and hopefully I have reported accurately. If I think of anything else or realize I misspoke, I will write more later!!!
As an aside, I wanted to share something that might have inadvertently helped to warm my face for the SFEMG. When I had bathed the morning before my SFEMG, I had exfoliated my skin with a microfiber cloth. I probably was too aggressive about it because I had not exfoliated for a couple of months... and my face looked and felt as though I had a sunburn by the time I arrived at my appointment. It was red and HOT! I was embarrassed... but, who knows... maybe it helped Dr. Weinberg get clear readings that confirmed MG?!
I really hope this gives some perspective to other seroneg's who are facing SFEMG's or who are still undiagnosed after having had a SFEMG.
Love to all!
Rosie
My SFEMG was performed by Dr. Weinberg at St. Elizabeth's Hospital in Brighton, MA. Dr. Weinberg is an experienced MG expert (more than 30 years working with MG) who runs is own EMG clinic and performs his own SFEMG testing with his own two hands on the patient and his assistant (who has been doing EMG's for 38 years) to operate the machine(s). Even though he has decades of experience, performing an accurate SFEMG is so intense/demanding that Dr. Weinberg performs only one SFEMG a day, two separate days a week.
Dr. Weinberg does not do an SFEMG on any body part except for the right eye. So, even if the patient's left eye is the droopy one, the right eye is the one that is tested. Even if the eyes do not droop, I believe that the SFEMG would still be conducted ONLY on the right eye. This is because with MG, the abnormalities at the neuromuscular junction that cause weakness are the same in all of the voluntary muscles, regardless of whether that muscle appears weaker than others. Hopefully, I got all of that right!!!
The goal with my SFEMG was to obtain 20 clean recordings of 20 seconds in duration from various muscles around my eye. I am not clear as to whether or not those recordings had to each be of a different muscle fiber or not, but he did repeat recordings that did not come out well and/or that were duplicates of other recordings. It took him at least an hour (or more) and 25 to 30 tries to get the 20 clean recordings of 20 seconds in duration.
A lot of fishing around was required to fine tune the location of the electrodes... to find the best "twitch" and to get a clean reading. While a recording was being made, Dr. Weinberg explained that nobody in the room was to move a muscle or to speak... not just ME, but also Dr. W and his assistant... during the twenty second recording. It was extremely intense... even for this renowned, highly experienced MG expert to perform the SFEMG. This does not match with some of the things other people have shared about their SFEMG's.
Dr. Weinberg had his left hand across my forehead the whole time, and used his right hand to adjust the needle electrodes. By the way, it did not hurt any more for him to insert the electrodes (which he did very fast) than it would when you get a flue shot. Needle electrodes were inserted in three different places. The only discomfort was from his fishing around for a better signal and having my eye twitching endlessly in very familiar ways, albeit more intense. I also had a surface electrode of some sort taped to my chin (and maybe another one above my mouth or on my cheek?).
Anyway, my guess is that the way Dr. Weinberg performs his SFEMG testing is not what some of you guys have experienced. To me, the takeaway from my SFEMG experience is that if it was this intense and this difficult for Dr. Weinberg to get the 20 clean recordings he requires of himself... and from a fearless patient... how in the world can someone inexperienced make a definitive proclamation that someone does NOT have MG, nevermind obtain 20 clean recordings!!! Even if my recordings had been normal, Dr. Weinberg would NOT have told me that I do NOT have MG.
Hopefully, I have remembered everything I wanted to tell you... and hopefully I have reported accurately. If I think of anything else or realize I misspoke, I will write more later!!!
As an aside, I wanted to share something that might have inadvertently helped to warm my face for the SFEMG. When I had bathed the morning before my SFEMG, I had exfoliated my skin with a microfiber cloth. I probably was too aggressive about it because I had not exfoliated for a couple of months... and my face looked and felt as though I had a sunburn by the time I arrived at my appointment. It was red and HOT! I was embarrassed... but, who knows... maybe it helped Dr. Weinberg get clear readings that confirmed MG?!
I really hope this gives some perspective to other seroneg's who are facing SFEMG's or who are still undiagnosed after having had a SFEMG.
Love to all!
Rosie
I find it interesting that my city's mg sfemg expert ONLY peeformed my test on my forearm.
...which is funny, given my recent ds facial drooping pic :P
Love,
tricia
Was the guy who did your SFEMG the head Neuro or someone he had trained? Could you request the head Neurologist?
I would love to read those articles your friend gave you and have them up on the Links page!!! WOW!!
I do need to correct one thing in my original post. What I meant to say was that Dr. Weinberg would not have told me I did not have MG on the basis of a normal SFEMG test. He was prepared to do a conventional EMG if necessary and, I believe he is comfortable making a diagnosis based on clinical observation and without confirmation by any available test.
I am excited for you, Carla!!! YIPPEEEEEEEEE!!! Answers are coming!!!
Rosie
I have no positive tests and quite miraculous responses to Mestinon according to my degree of myasthenic weakness!
The SFEMG was perfomed by an extremely open minded female practitioner on left eye and around. I think they did 15 tries. I was extremely warm and myasthenic and normally dont have ptosis but developed it that morning from overheating myself wearing wool garments and a scarf! I was as ready as I could be.
I was even asked to come back the next day. The practitioner was SO convinced I had MG despite her negative tests that she referred me directly to a neurologist with experience in MG. But the letter came the other day and the date of the appointment is some time in 2013. That is a long time to go on your own being unsure about a medication you are allowed to take without supervision and on your own with your inert lungs and periods of restrictive breathing. I realize I wouldnt have had to wait 5 months after an SFEMG for my first appointment for MG in 4 years of symptoms had the test been positive.
Nevertheless that is the thinking here. Its all about the tests and not the symptoms.
Thanks Rosie for all your help and the fantastic description. I always enjoy reading the details about things. You had plenty!
Trisha - my Mestinon worked like this: Double vision disappears in 20 minutes after Mestinon, vision can be measured to have improved focus by 20 cm after Mestinon, diaphragm weakness (surprisingly) improves as did deltoid strength (by 60% on first dose) Trisha - What use is a test that is anywhere between 0% and 100% accurate?!!
Have a great day.
Tricia Im following your story everywhere as well :)
Calmday
I no longer get the test done as my nerve conduction is now normal thanks to prednisolone.
Dr. Burns did the top of my rt forearm to get the numbers for my diagnosis.
He did some testing on my neck due to some weakness I was having that day but I couldnt hold myself in the position long enough for him to get anything.
I think it was about 30 mins long but might have been a little bit longer, not sure.
I read that most physicians prefer to use Volitional Effort (where the patient follows commands and maintains a steady contraction) than the Stimulation SFEMG, (which is used when the patient is not able to follow commands or, as in my case, the patient has a tremor).
I believe that the SFEMG using Volitional Effort produces obvious results more quickly and easily and that the Stimulation SFEMG requires more readings to detect an abnormality and the abnormalities are less obvious.
This is the link to the article I read (and cited here) on NCBI entitled "Single-fiber EMG: A review" by V. Arul Selvan: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108086/
There is also a very interesting set of SFEMG videos on a YouTube channel called SFEMGinfo from Sweden: http://www.youtube.com/user/sfemginfo?feature=results_main
If we don't already have these on the links page, I can post them there. Has anyone else had the "Stimulation SFEMG?"
Thanks!
Rosie
If a test missed 1 out of 100 diabetics there would be an uproar, and demands for better testing.
Here again is the statement that 85% of people with myasthenia gravis are positive for AChR antibodies. That is a misstatement that should be corrected by all editors in the journals--whatever the percentage, it is a percentage of DIAGNOSED MG patients. Even AChR+ people with MG may have trouble having the diagnosis considered and testing done. But if it is done and positive all those people will be diagnosed. Of those with negative blood studies the chances for people who actually have MG to be diagnosed is not going to be 100% with such misleading information being circulated. Who do we sue? We can laugh, but it is really tragic, not funny. b.
The YouTube videos are extremely technical (to me, at least!), but you can at least see various demonstrations of SFEMG testing procedures if you are interested. I can not vouch for anything else about the videos or the group who produced them, though.
When I am feeling better, I hope that I will be able to help in some small way to get up-to-date info out to help inform and educate medical professionals. Don't laugh... ROSIE is beginning to SOAR!! :-)
Dont worry. I did get my posative diagnosis from the readings in my rt arm.
I wouldnt dispare if they do use your arm. I am also sero neg. And was not having my worst symptoms when I went. Still they got the readings.
One of the presenters in Atlanta is a biostatistician who is involved in the thymectomy study, if there is any opportunity (and those of you going hold me to this because it is going to be difficult for me), I will ask him how these things get past review before publication. He must know (be?) one of the reviewers. Wish you could be there to prod me, Rosie! b.
I would have been there with you if it had been at all possible... but then I found out that we have the MGFA MA/NH annual meeting and luncheon on November 4th!!! I gotta support my own group here... lol!!!
Dr. Neil Porter from University of Maryland will be the keynote speaker, and Dr. Weinberg will be receiving special recognition. My husband, mother and daughter will be attending with me for sure... and I am trying to get my PCP to attend!
So... I will have to wait to meet the rest of you!!!
Thanks again, b!!!
Elinora... from what I have read, the muscles around the eye give the most accurate readings. If he does your arm, you could ask if he will do your eye if your arm is negative. I also read that people who are in remission still have an abnormal SFEMG.