Sometimes patients want to be reassured and told that there is nothing they should be concerned about.

Sometimes the diagnosis is not straightforward, and the expectations of the patient influences the physician's decisions (physicians are people after all, and so are patients).

I have seen two patients in my clinic recently. Both with fairly similar complaints which could be anything from a minor temporary problem to the first signs of a more serious condition.
One wanted every possible test to be done and consulted numerous physicians (getting very conflicting information), and the other was very happy to know that I have found nothing wrong and hardly agreed to even come for a follow-up visit.

I know that I myself, when I was referred to an MG expert, wanted him to tell me that this couldn't be MG and a few days of vacation is all which is required.
And this is exactly what he said. I had vague symptoms (at that time), a normal neurological examination and a history of similar symptoms years before, which turned out to be "nothing". He also suggested that he would do an EMG or that I could try taking mestinon, but I just asked him to write a letter to my endocrinologist telling him that this is not MG. And he gladly did that.

What I am trying to say is that no doubt that some physicians forgot why they decided to be physicians (or maybe chose this profession for the wrong reasons) but there are many who didn't.

I don't know Dr. Howard, so can't say anything specifically about him, but you don't know what kind of interaction he had with your sister. MG is a fluctuative illness, which improves with rest. Possibly he saw her at a relatively good time. Some people try to let their neurologist see them at their worst and others do the exact opposite.

I don't know how severe your sister's symptoms are or how much they interfere with her life. If they don't too much maybe she is doing the right thing. I had mild MG symptoms 20 years ago, and they disappeared without treatment for 15 years.

It is hard to know what my life would have been like, if I was given steroids then. Possibly it would have led to severe deterioration in my condition (like it did now).

When I was a young fellow and very eager to treat a patient I saw in my clinic, the head of my department said to me- It takes an excellent physician to know when and how to treat a patient, it takes an outstanding physician to know when not to give treatment.
Most physicians tend to put more emphasis on the potential benefits than on possible risks. Very few truly weigh both and are honest enough with themselves to admit that they have very little to base their decision on.

I am very fortunate that after quite a few years of having excellent physicians taking care of me, I now have an outstanding one.

Does the attachment picture of my son look like mild ptosis.....or am I totally way off? Any honest opinion welcome.


Thanks for this, Alice:

And even more so for sharing this:

Anacrusis

Attached Images

Ptosis2?.jpg (55.5 KB, 110 views)

I diagnose him with beautiful eyes. As for ptosis, well, in the photo one eyelid is clearly higher up than the other. First, this might be just a quirk the camera caught. Is it just this photo, or do you notice this often when you look at him? If you do notice it, it may be just the way he was born, and it has nothing to do with MG. But I think the crucial question here is: do his eyes always look like this, or just sometimes? If this is variable--in other words, if his eyes seem equally open in the morning, but not in the evening or when he's tired--then it's definitely worth looking into. Also, even if it's not variable, if it's new, you should have him checked out. If you're not sure, look at older photos of him and see if you can notice it.

Congential myasthenic syndrome is hereditary. I believe that there are both dominant and recessive versions. Myasthenia gravis is not supposed to be hereditary, though a predisposition to autoimmune diseases in general certainly is. And then we have Mike (PingPongMan), who's a special case of everything... with CMS in the family and antibodies besides. Nobody can figure that guy out!

Abby

Anacrusis, If you have any concerns, just take your son to an ophthalmologist! A sideways photo is not as good as a straight on shot. And a photo is not as good as a shot at a doctor!

Abby, I know someone whose sister has MG too. And another situation where it looks like that but the person won't get checked out! I have to wonder if it's more common than that. Is it actually getting reported and to whom?

And what if siblings have a less severe case of MG? In some dominant forms of CMS, one sibling can be very bad while there can be another where you can't even notice they have a problem but they test positive for that particular CMS. I wish the PDF and Powerpoint files I have weren't so huge or I'd post them.

Annie

Thanks for the nicest diagnosis our family has ever received, Abby!!....Annie, thanks as always

The´ptosis´ started 3 days after birth and is definitely fluctuating from normal to slightly ptotic especially with throat infections etc. One day it´s there the next day it´s not. Always the same eye though. It is getting a little worse over time but very very gradually. He also complains that all things have 2 lines just since this summer.....´Mummy it looks like two apples on top of each other but I know there is only one apple´.

We just got a call yesterday for an immediate appointment via referral. My son got to see both an orthoptist and ophthalmologist just a couple of hours ago. No nerve damage, some slow reaction times, no glasses necessary but still double vision. Showed a selection of pictures.....Ptosis was also elicited during the eye exam - yet the ice pack test did not resolve my son´s ptosis like it does with mine.....
His next stop will be a children´s neuro appointment at the hospital in 3 weeks time. The ophthalmologist´s opinion was that the neurologist would know much more about it than he. So there´s a neuro appointment for each of us now just around the corner, but first - a well deserved week of holiday.....

Just want to wish you good luck! Both with your son and with yourself, it must be weird to both have appointments.

I was totally thrown off my perch today.
I was expecting my son to be´discharged´from the neurologists office today after his mild ptosis failed to resolve with ice pack test at a previous ophthalmologist visit. So I sent my husband along with my son and did not go along myself. After a one hour exam and with his ptosis worse this evening than in the picture the neuro said he could not rule out the beginning stages of MG anyway. – So we now need to go back in again soon for more testing and also blood tests.
So.... - not what I was expecting