Great information, Annie! The appointment is Feb 4. I've been told he'll do thorough testing but haven't been told whether it's repetitive stimulation testing or SFEMG or even tensilon. I'm preparing for any event as best I can.

Anyone, any additional tweaks or recommendations? (See next post)

Best Practices in Preparing for SFEMG

In considering these guidelines, LISTEN TO YOUR BODY to avoid overly distressing your system. These guidelines are not meant to take the place of doctor's advice.

Find a technician/doctor experienced in SFEMG to increase chance of getting accurate test results.

Up to 14 days prior to testing...

1. Discontinue pyridostigmine/mestinon. (See Note re: cholinesterase inhibitors)
2. Avoid nightshades (e.g. potato, tomato, eggplant, tobacco, peppers, goji berries,...) (See Note re: cholinesterase inhibitors)
3. Avoid caffeine, chocolate, tobacco and other stimulants

Up to two days prior to testing...

4. Stay well hydrated
5. Wear yourself out with exercise (unless already debilitated). Use best judgment to avoid overly distressing your system

On Appointment Day...

6. have heat running in the car while being driven to the appointment
7. dress warmly to compensate in case the testing room is not sufficiently warm
8. Don't be too alarmed if the doctor doesn't test your weakest muscle since other factors may influence which muscles to test (e.g. Subcutaneous fat of 9 mm (millimeters) can reduce an EMG signal by 80%)
9. During test, relax & help the doctor get best results by following instructions carefully (e.g. If testing forearm muscle, the doctor may say "lift this finger a certain degree to get the best signal.")

*Note: A report indicates cholinesterase inhibitors remain in a person's system 2-14 days after discontinuation & may negatively affect SFEMG test results. See Link: http://www.ncbi.nlm.nih.gov/pubmed/2540433

Good, I'm glad you saw that article by Howard in the other post. Again, it's a very small study, so you might want to reference that or people might stay off of Mestinon for 2 weeks and harm themselves by doing so! It's not a good idea to follow a study. Patients should follow their disease and their doctor's advice. Plus their own instincts!

Plus, you should reference the actual studies via a URL. I don't have time right now to dig up the EMG info (SubQ fat, etc.).

Annie

Annie,
I'll adjust wording & links to reflect what you've told me, as well I'll search for the study referencing subq fat.

Anyone else with ideas or concerns or questions about the content?

Hmm, it's not really part of preparing, but I would like to say to people: the needle shouldn't be painful while it's in. If it is, tell the doctor and ask him to move it.

I can't decide if this is sad or funny.

People are preparing for a medical test, which is meant to diagnose their illness, or in other words give their physicians the tools required to give them what is likely to be effective treatment. (as why else should they care about the name of their illness?).

Some are even ready to risk themselves or get their illness out of control for that.

One can't wonder while reading this:

A. what does it say about this test?

B. what does it say about the physicians who are doing it?

C. what does it say about the physicians who are interpreting it and making medical decisions based on it?

Or as I have said many times in various forums (including discussions with neurologists)-The SFEMG is a test with a very low sensitivity and specificity, very inaccurate and very operator-dependent. It's accuracy and reliability have never been tested in patients with less typical forms of the disease. Using this test as the "gold standard" for the diagnosis of MG leads to nearly 50% of the patients with a clinical picture of myasthenia (and no alternative diagnosis) being left out with no diagnosis and no treatment (not even adequate supportive care).

This thread makes me even more convinced that its time to ban this test, or at the most realize its significant limitations and stop using it as the "gold standard" for the diagnosis of this illness.

There is no way to "prepare" for a medical test.
Some people who have a heart attack will have a completely normal EKG. They can't "make" their EKG be abnormal, no matter what they do.
Some people with leukemia will have a completely normal blood count.
Some tests require certain provocations, withholding of medications, but those are done by the physician doing them not by the patient.
You do not prepare for an exercise stress test, meant to see if you have coronary disease by stopping your medications and jogging prior to the test.
You do not prepare for a metacholine challenge test by inhaling fumes prior to reaching the clinic.

In the early days of my illness, I had a neurologist-an MG expert and also one of the best SFEMG performers. He had no doubt that I have MG, but had to find proof for that.
He told me that without a diagnostic SFEMG he can commit himself to this diagnosis, even though clinically he has no doubt and he has no other alternative diagnosis.

I agreed by his advise to stop all treatments and medications for a few weeks, as he promised me it will be safe and there will be no ill effects ( I still don't know today what effect it had on the course of my illness).
He told me to call him whenever I feel that I am having myasthenic weakness. He came in the late evening to do a SFEMG. He tried numerous times to get the "proof" he required, but as all my SFEMGs were repeatedly completely normal he started doubting himself. He no longer thought my clinical symptoms were myasthenic. He started thinking I have "emotional problems". Even when I crashed in front of eyes and my O2 sats dropped, he decided that I was just "anxious" and the Pulse Oxymeter was unreliable.

Trust me, he did everything possible to "make" my SFEMG positive. He strictly followed all your "best practice" guidelines.

Another SFEMG expert did a very elaborate test when I was (by all reasonable criteria) in myasthenic crisis due to withholding of a medication by the advise of my wonderful expert neurologist. He too got a completely normal SFEMG. It was therefore decided (by the same wonderful MG expert) that I was in "remission", yet not "aware" of it.

This actually fits the "alice in wonderland" logic. If patients can "prepare" for a test, and thus make it positive, why can't they be in "remission" without being "aware" of it?

Just like those cartoons in which bugs bunny walks in the air and doesn't start falling, until he realizes what has happened.

It's all up to us, the patients. If our SFEMG is not diagnostic then obviously we didn't prepare well for it. If we are nearly paralyzed and unable to breath on our own it's because we are not "aware" that we are actually healthy and strong.

If we dare criticize this "alice in wonderland" logic, it's obviously because of our mental problems which make us not only incapable of understanding that we do not have an insight into our own illness (as opposed to wonderful excellent MG experts), but also lack the ability to understand their complex way of thinking.

Yes, Alice, I agree that this is absolutely bonkers. But so is being treated like the Mad Hatter by neurologists.

Patients fast before a basic chemistry, glucose monitoring, cortisol and cholesterol tests. If you eat before a morning glucose, it's not an accurate fasting glucose! Yes, they can do a A1C test but that's not always accurate in diagnosing diabetes either.

Patients withdraw from caffeine before a stress test. Why is that any different for an EMG/SFEMG? It interferes with both tests' results.

I realize that "preparing" for a SFEMG is silly, however, when a test is so unreliable, trying to create the best conditions for that test is not silly. You are right that the test is highly inconsistent. It's also time consuming and there are very few people who can do it, let alone analyze it, well.

Factors like subcutaneous fat SHOULD be taken into consideration when a doctor evaluates results. It's not unlike how a low voltage QRS might not give the best results for a cardiologist unless they magnify the wave on the machine before testing an overweight patient.

Is this information useful for a patient with MG? Yes, especially when a doctor proclaims that they don't have MG based on a negative SFEMG. MG is a clinical diagnosis backed up - not backed down - with test but there are neurologists, as you say, who follow that Gold Standard because I'll bet not one of them wants to put down the work of Erik Stalberb (inventor of the SFEMG). Or due to the "because I said so" proclamation by behemoth institutions (you know who you are!). So it's not only about gold standards but also about PR. And ego. And money. And lots of things that have nothing to do with the truth.

Frankly, I think the neurology community is long overdue for an overhaul in how they approach not only MG but women in general. Yes, a few men get the "it's all in your head" approach too. It's time to SPLIT the practices of psychiatry and neurology. In their minds, they are so intertwined that they can't objectively see patients and their diseases at the same time, IMO. Yes, other specialties tend to go straight to the psychosomatic game but it's neurologists who've brought it to a whole new level of crazy.

Seishin is trying to do something useful for patients. I applaud that. Whether it's something we should have to do or not, it's a reality we're often faced with during the diagnostic process. At least being aware of these parameters and prejudices is useful. It was for me years ago.

The neurologist who diagnosed me told me that he has seen MGers in wheelchairs who test negative on SFEMG and MGers who appear to be fine test highly positive on it. So while it's a useful test for those it does help to diagnose I don't think it should be discarded completely simply because it doesn't diagnose everyone.

Perhaps if medical school could produce "creative diagnosticians" who see the patient and not only rigid test results and algorithms, we might have "happy" patients instead of the completely distressed ones we often encounter.

Abby, my SFEMG's were all painful, no matter where the needle was placed. Interesting. I wonder if that has to do with the damage from my B12 deficiency.

Sorry, Seishin, I had to get that out. I hope your SFEMG goes very well.

Annie

This is one of many articles on an EMG and subcutaneous fat.

http://www.ncbi.nlm.nih.gov/pubmed/12812327

*** SPOILER ALERT!-- I'M VENTING, YOU MAY WANT TO SKIP ***

You've both expressed really well the frustration I'm feeling.
My diagnosis was based on a positive response to mestinon. Now, the neurologist (who's not previously encountered MG) is wanting to step back from calling it MG until I get more proof. So the burden of proof is on me, the patient, to demonstrate this isn't in my head.

I've tested negative for three antibody receptor tests thus far.
I'm waiting on Musk test results, but realize there's a chance having taken mestinon unabated (at their instruction) might result in a false negative.

Accompanied by:
A negative test result from five doctors checking muscle strength rather than checking for muscle fatigue through physical repetition ("nope, not MG")
A negative test result from four doctors who don't recognize partial ptosis as a symptom ("You don't LOOK like you have MG")
A negative test result from a brain MRI (which doesn't diagnose MG anyway).
A negative test result from creatine kinase (which doesn't diagnose MG anyway).
A negative test result for porphyria (which doesn't diagnose MG anyway).
A negative test result from a regular barium swallow which wasn't focused on observing the swallowing mechanism while stimulating fatigue (so it doesn't indicate a possible secondary symptom of MG anyway)
Add to that a negative EKG from visiting the E.R. for aspirating saliva & pain in my sternum (ongoing)....

The frustrating thing... I've attempted to guide them away from useless tests, toward the proper tests and to educate on how to conduct them for accuracy, which they've chosen to ignore. Obnoxious of me? Yes. But in the absence of leadership,... Not being heard is the most frustrating aspect,.. a lot of this 'negativity' could have been bypassed.

Cancer patients will sometimes be assigned an advocate at their hospital. That's what I want. A noisy, squeaky wheel-of-a-person who gives hell and takes no prisoners so I can try & live the stress-free lifestyle touted for MG'ers.

Oh, boy, do I know and feel your pain and frustration!

You should see that ONE photo of an MG patient on that TWO page spread in their medical books. Okay, sometimes it's two photos. It's an exaggerated photo. And they get the oddest looking people (no offense to them) for the photos. I also think the photos are decades old.

MG and, therefore, ptosis, can be anywhere from mild to severe to dead. My ptosis didn't get to the point of not being able to open my eyes more than a slit until my MG crisis. Some people have that happen daily. Idiots.

Students are taught in medical school that what they are being given are the "right" answers. Period. If they were taught all of the variables of pathophysiology, diseases, presentation and treatments, they'd be in school for 20 years. That's why there are specialists.

If one of those four doctors who said mild ptosis is not indicative of MG is a neurologist, they need to go back to school.

Have you seen a neuro-ophthalmologist? Sorry, I can't remember. They have objective tests to figure out if you have double vision, if it's the binocular double vision of MG (goes away when you close one eye) and if your eyelids and/or eyebrows fatigue/weaken.

I took a photo of my face before my MG crisis and a couple of weeks after treatment. I looked like I'd had a facelift. Before, my entire face - even my nose - drooped. I like to call it nose ptosis. What excuse would all of your doctors give for my nose to droop? Humidity?

So, if you haven't already, take some photos of your face before and after having Mestinon. Make sure the tilt of your head, the lighting and camera exposure are the same each time.

This is all so incredibly stupid that I feel like taking another shot at enacting new legislation. This behavior by doctors is ABUSIVE. Workers are protected from abuse. Children are too. Why aren't patients protected from abusive doctors?!! Medical boards often side with the doctors when faced with such allegations. No, they shouldn't have an unfounded complaint that turns into a "witch hunt" but they have got to stop hurting their patients. They've sworn not to, right? "Allegedly."

Call your insurance company and see if they have any patient advocates.

I figured as much. Earlier edits of my post indicated a similar conclusion.

It comes back to that concept "curiosity of spirit". I work with cancer patients, and when I encounter a rare cancer, I get intellectually excited by its uniqueness and try to learn more about the cancer. I'd think these doctors SHOULD be excited to see me! It should make their month!

I want a complete role-reversal where the doctors are going all out to schedule an appointment with us! Given MG's rarity, doctors should be climbing over each other, begging for a chance to stake their claim at diagnosing this & being involved first hand. It'll be like one of those reality show spinoffs,.. "Who's deserving of the rose? Who's shown me the most respect, heard me, demonstrated a willingness to stick out their neck, do research & ask questions? Who recognizes nose ptosis when they see it? Okay, You! Third from the left! Step forward! You win 'Beee Myyy Doctorrrr!!'"

He needs to go back to school. 'Nuff said, I can't talk about that man.

Thank you, I'd not heard of this. I've made a note in my MG bible to revisit it.

Hahaahahaaaaa!!!!

We're in mind-meld agreement. The fact you're already such an advocate for us on the board, and with your wealth of knowledge,.. that would be beautiful to see.

I haven't contacted this group yet, but I hope they can do something to help: Advocacy for Patients with Chronic Illness
http://www.advocacyforpatients.org/

Also, a friend has directed me to ADAPT. In the 80's, they chained themselves together during rallies fighting for the passage of the Americans with Disabilities Act (ADA). They are also very active in Medicaid reform. www.adapt.org

MG'ers would make the perfect protestors for reform. The Powers would have a heck of a time dragging away our limp bodies....