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.

went to try the test after 12 or so blinks i stop did not want to ruin my eyes for the day lol

Sorry all of you are going thru this. Even when you finally get a diagnoses there is no secure place, really. They even question each others diagnoses. Sure is quite the learning experience dealing with Neurology. Tests really do not encompass reality. Eveyones body is so different. And every day is so different.