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

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 :(

So sorry to hear that. I am sending good thoughts your way that nothing comes of it.

My son has a puffy lid like that...he was born with it.

In fact he also has some conjuntival swelling in the same eye.

As he grew up it became worse and we ended up at a specialist who did a CAT scan of his face and head. (looking for a sphenoid bone defect).

The diagnosis was congenital damage from an amniocentesis procedure I had...that the needle poked his cheek near the eye and upset the lymphatic drainage and caused the puffy eye.

He is also congenitally nearsighted (legally blind).

Here are two photos...
2) is at 3 mos before we had his specialist vision intervention at
8 months. His left eye always looks this way, sometimes a little less, others more.

1) This is a photo at 5 or 6 yrs...showing the eye, left again, but I had to enlarge it so it is blurry.
I can't tell you how many doctors we've seen over the years.
Recently he started getting blurry...and ended up at the Univ. of Michigan and saw 3 specialists who cannot fix it or help it any at all.

3) shows him as an adult...the angle looking up does not show the puffy lid as much but it is still there. It can be worse at allergy season, and this picture was taken in winter.

One puffy lid may be due to something else besides MG.

I would suggest a heavy metals test, as ptosis can occur with some mercury overloads, or other heavy metals, lead, arsenic etc.

This link has a photo of Freda Koss who had mercury toxicity. Her eye
shows the ptosis clearly. She has a separate website also discussing this environmental issue.
Scroll down this link to find her:
http://www.mercurypoisoned.com/FDA_h...am_safety.html

Believe me we have covered many many bases over the years, with my son's eyes and esp the left one. He does not have MG at all.

Just adding this to the thread because of our experiences.

Thank you Mrs D Your post has helped ´round out ´this thread for anyone needing more ptosis info. And thanks so much for sharing your story and photo examples of your (very handsome) boy!

The only other discrepancies that we have to consider in our family are the following:

1. We live in an area with high radon levels. We haven´t tested for quite a number of years.

2. I also got a high Uranium level on the heavy metal section of a hair mineral analysis test. I´m not entirely sure those tests are 100% valid though.

Thanks again,

The link for Freda Koss was quite fascinating
(I had all my mercury fillings replaced to see if it was causing CFS a number of years ago.The dentist warned me only two out at a time as she had previously worked on a patient who developed neurological symptoms from the excess of fine particles when drilling all out at the same time)

Anacrusis

To MrsD
 

I was thinking last night your family must have been through a lot. Normal life is enough but when you add health/disease problems with children into the picture - that is when the real challenge is presented for any family.

It really is one thing to suffer yourself, but when children do it´s another story. Everything takes on a completely different perspective. I do hope my son´s double vision (which presented itself at the neuros again) and mild ptosis are nothing serious but we´ll just take one day at a time now.
Once again just wanted to say - before it becomes too late - that I so appreciated the story you have shared on this thread.

I´m also glad to have heard that your son is doing well despite all the setbacks he has had to encounter during his life.

All the best to you – and to the cats as well!!!!!!

Anacrusis