http://casereports.bmj.com/content/2...2008.0724.full

This may be of interest. It's a screening test for MG (that means that if you test positive, it doesn't mean you have MG, but that you should be tested for it).

It's a very simple test: you blink your eyes as quickly as you can for one minute. Typically, if you have MG, at the end of the minute it will be hard to open your eyes. But if you close them and rest them for two minutes, you regain strength.

Abby

A minute? I could only make it about 15 seconds.

Good find, Abby. I found this statement to be utterly hysterical.

1) Older people can lose acetylcholine and have some fatigue of muscles.

2) I have heard more than one neurologists say things like "It's mainly ocular MG" or "Ptosis doesn't prove anything" or "You have to have a positive SFEMG too." This kind of "test" sets MG patients up for a roller coaster diagnostic ride.

3) What age would demonstrate this fatigue effect? Babies?

4) What about someone "unhealthy" who doesn't have MG?

And if someone doesn't react "exactly" how they say, will they dismiss the idea of MG? Some people fatigue more quickly than others. Why are they always looking for the cookie cutter algorithm for everyone?

Sorry, I'm being a little cynical. There are many "clinical" exams a doctor can do to "see" fatigable weakness. What I'm concerned about every time a new "test" is found is that, since they are often looking for that one "magic bullet" test, what tests will they exclude in favor of the new one?

It's like with celiac disease when they "declared" that the reticulin antibody didn't have to be done anymore because the "majority" of patients with CD had the endomysial or tissue transglutaminase antibodies. Tell that to me and all of the other patients around the world with a positive reticulin antibody.

I'm glad doctors out there are thinking and finding new ways to "quickly" identify MG. But I can almost feel the opposition to this test by other neurologists. Probably because they didn't think of it first. It would be a good thing to do if a patient presented in the ER with breathing problems, etc.

Kind of ticks me off too since my "ocular MG" was missed for 40 years.

I do really appreciate you finding this, though. Every little bit of evidence can help those of us with MG, diagnosed or not!

Annie

Well, I certainly hope they wouldn't use it as any sort of decisive test. Maybe I'm naive and overly optimistic to think that a doctor would get the difference between a diagnostic test and a screening test? This one is clearly identified as a screening test.

When I see the neurologist, he does all sorts of tests on me (you know the drill): push on my hand; do you feel this pin prick?; look up; count to fifty; walk on your toes, walk on your heels; that sort of thing. If I pass these tests, it doesn't rule out MG. But if I fail one of them, it indicates a direction that needs to be pursued. That's where I would hope this new blinking test fits in. I certainly hope it's not abused as more "evidence" against those of us whose symptoms aren't typical.

This test would have done me some good. I have eye symptoms, but they're so subtle that it took a specialist in occular MG to notice them. My apparent lack of eye symptoms was a big strike against my diagnosis.

Abby

Well, while they call this a "bedside screening," they said the diagnosis was confirmed with a positive AChR antibody test. Even that's not enough for some neurologists. They sometimes say to patients "MG antibodies are positive in normal people too."

I'm certainly not being sarcastic towards you or the information! I should probably not respond to posts like this. Too much "pooh-poohing" by neurologists after OVERWHELMING evidence of MG.

Sorry, Abby, I didn't mean to inject doubt. I personally look at ALL evidence whenever solving a problem. I even have an excerpt in my book about this "MG Expert Crisis" and how inconsistently they diagnose and treat patients with MG and how they need to look at ALL of the evidence; even photos.

Annie

Hi,

I am positive for the blink test, the ice pack test - which is only positive on people with MG generated ptosis.Several studies in medical journals have proved the ice pack test is only positive in MG and not other diseases that cause Ptosis, like diabetes or horners syndrome.As it cools the neuro muscular junction.

But apparently they dont count. Its crazy as in countries where they can't afford to do the blood tests a postive ice pack test is the only diagnostic test they use.

I am also postive on the rest test - when you have ptosis lie down for 30 mins with eyes closed in a quiet environment and the ptosis resolves.

I also pass the upward gaze test - look up and I get bilateral ptosis, unilateral if I am lucky.

I have mild ptosis most of the time with both eye lids. My eybrows arch constantly so I look permenantly surprised. I will have that look on my face when a neurologist finally admits I have MG and treats me for it! LOL

But I have no anti bodies and no positive sfemg, despite the fact a neuro opthalmic examination will get the response that I have MG. Until the bloods are done again.

At present I am more and more convinced I have occular MG, not generalised. Occular MG has a higher rate seronegative and a high incidence of normal sfemg's. I think my weakness elsewhere in my body is being caused by postural orthostatic tachycardia and hypermobility syndrome.

Thank you for posting this.

Unfortunately I like Annie can already feel the hostility coming from other neurologists. They seem so set in their ways that you can only have MG if you have a postive blood test and positive SFEMG. Until they open their minds neurologists will just ignore this until it fits with their world view.

I have brought this up with so many neuro's even in the UK's centre of excellence with one of the worlds leading experts on MG.

Its great that you have posted it though as those without a diagnosis will have yet more proof for themselves that
a) they aren't crazy
B) they dont have somotization disorder
c) they dont have conversion disorder
d) That they are right to believe in themselves and fight for the answers.

I'm sorry if I have come across as old and cynical. This information is great for people who are just starting on their journey to get a diagnosis.

So I am really sorry if I have come across as dismissive as that's not the way I want it to appear.

Rach

If you guys are less than wildly optimistic about the good this new little test will do, your reservations are based on wide experience!

Abby

When I already required intermittent respiratory support due to "recurrent acute respiratory failure" (according to my pulmonologist), the validity of this was questioned by a leading expert neurologist (to whom I was referred) , because it was based only on my pulmonologist's clinical impression and effort dependent tests.

Therefore I was referred to a respiratory neuro-musuclar expert to have more objective and reliable tests.

I had a sleep test, that showed of CO2 retention. This was then followed by direct measurement of diaphragmatic strength , which showed significant objective, not effort dependent weakness and fatigability (in a myasthenic pattern).

Based on this the world leading neurologist diagnosed myasthenia and admitted me for plasmapheresis (which led to dramatic, and very short lived improvement). He also did a test searching for possible antibodies that were not found in the usual assays, and this test detected low-affinity anti-MuSK


I was now told by a "genius" neurologist, that those test results could be seen in the normal healthy population.

Abby, I wish every single neurologist were altruistic and kind. I wish they would look at every single patient as truly sick. I wish they would consider every single piece of evidence, including honest intention, when clinically evaluating a patient. I wish they would put the horse before the cart when treating a patient, having fully diagnosed them first. And I really wish they knew how to take off their arrogance like a coat at the front door of their clinics.

I'm glad you put this bedside screening up here. I'm sorry you caught me on a day when life was beating me up. I am very sorry if I offended you in any way. My belief is that every single piece of information that could help a patient is important. This is no exception.


Annie

Annie,

Certainly, no offense taken. I am still reeling with the realization that for all that time I was thinking, "If only I could get a positive antibodies test, things would be settled"--and then I hear stories of people like you who did test positive, and somehow that wasn't enough to make the doctors acknowledge it.

I really feel like I dodged a missle. I came in with a normalish SFEMG, no antibodies, atypical symptoms, and a weird gait that the MG doctor had never seen before, though he's seen 800 MG patients. Looking back, it seems almost like a sure thing that I would have been diagnosed as psychogenic.

My point (wait, I think I have a point...) is that I realize that the care I've received is not normal.

Now if I could only get my neurologist to call me back so I can start getting treated...but realizing how unusual the quality of my care has been so far makes me more patient.

I hope you can get a little relief, even if it's just temporary. Today was warmer than freezing for the first time in I don't know how long--I stepped outside into the sun and realized how much I've missed it. Let's hear it for springtimes, both meteorological and emotional.

Abby

As much as I rag on doctors, I am lucky that my general practitioner and the radiologist suggested that I had MG.

(After I had been misdiagnosed with Bells Palsy and CMT, about ten years prior.)

Otherwise, I would not have had a clue of what I had. Plus, once it was strongly suggested I had MG, I still had no time to digest the news or do any kind of research, since my father was in the hospital dying.

I am grateful that throughout all of that I withstood one neuro giving me the brush off, and thankful I had the sense to try again, because that neuro confirmed it.

However, what I learned is that the more unique you are you get different cooks in the kitchen telling you what you have.

After, I got my diagnosis I still wanted to know about the thing in my chest; the thymus, something else I didn't know even existed.

Anyway, I got two more doctors saying I didn't have MG, then I get one of them changing his mind. When in reality, I just wanted to know about my ever growing thymus. I didn't need their opinion on my diagnosis of MG, but like a-holes everyone has one, but I am still waiting on the answer on the thymus.

Stella, I am grateful for the bit of knowledge that you bestowed upon me, because I tried that blink test. That old dude did better than I did. Keep the information coming.