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Old 07-25-2013, 07:05 PM #11
Heat Intolerant Heat Intolerant is offline
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You might ask anyone who tells you ptosis in MG should be bilateral whether they wouldn't say that a person with bilateral ptosis has "bedroom eyes" or some other form of beauty.

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Originally Posted by Unsure81 View Post
As I've said on a previous post - I wish these Neuro's would all get together and decide what symptoms determine a diagnosis of MG
A bunch of people who are collectively blind as bats, mad as hatters, and dumb as doornails getting together and making a decision might result in bedlam.

I wouldn't even like to see how a group like that would try to get most physicians and MG patients to believe that the ptosis of MG is only bilaterally symmetrical.
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Old 07-27-2013, 10:03 AM #12
Anacrusis Anacrusis is offline
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Quote:
Originally Posted by Unsure81 View Post
Attachment 7604

This is how I look at 8am after 8hrs sleep and again at 3pm to try show you all what I mean!
Thanks for posting a photo of yourself with symptoms.
First of all you still look nice on both
I have never really been a ptosis kind of gal but I have a photo example of me with ptosis of one eye and raised eyebrow from extreme heat on holiday but am not brave enough like you to post mine! I consider it mild and so it dissapoears completely with an ice pack.

Have you taken pictures after an ice pack at 3pm???

Yes, my mirror neurons agree that there's definitely some physionomical MG muscle weakness lurking around in that 2nd portrait.

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Old 07-27-2013, 12:01 PM #13
Unsure81 Unsure81 is offline
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Hi Anacrusis - thanks for your kindness, I suppose it's a bit like going to the dentist - we always feel its worse than maybe others do?! I only noticed my droopy eye when I took hourly photo's for my Dr - I think I have always just focused on my mouth drooping before! I would say I'm on the milder end as I have read posts with people who's completely close which must be awful!

Here is a picture I took for my Neurologist before and after a 2 minute ice pack test - what do you think? My Neuro #1 said def not MG, Neuro #2 said highly suggestive of MG?!

Signs of a weak muscle?-image-jpg

Please excuse my bright red nose on the after picture! Haha!!
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Old 07-27-2013, 12:47 PM #14
Anacrusis Anacrusis is offline
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Hi Unsure!

Just for one minute only, forget about what the contradicting neuros think.
What does it feel like when you actually put the ice pack to the affected areas?
For me it was as though the muscles started pulling immediately, my eye seemed to come to life again and I had a great sense of relief - well, for a little while at least.

Maybe some of the more experienced ptotics would give a better answer!

I looked at your new photos on my phone - It looks like a grey area but I do see that your face does also appear more alive after the ice pack, though the difference is not dramatic at least on my small screen.

I have never experienced a red nose experimenting with ice packs - but that is only because I was always too busy sticking my arm in the freezer drawer testing for improved hand, forearm and deltoid strength


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Old 07-27-2013, 02:29 PM #15
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I have to say that I found the ice quite a relief to my face which is odd as I expected it to feel harsh somehow? I could happily have sat with the ice pack on longer so it was definitely a pleasant experience. Afterward my face felt lighter and I felt brighter and refreshed (but ice would refresh I suppose?!) I can't say I had any pulling sensations but my movement improved and I was very happy that it improved my facial droop - it just didn't last very long unfortunately!

I have swallowed any remaining pride I have and posted the photos onto their own post to see what everyone thinks as people may miss them here? It's a bit scary to open myself up to everyone's opinions but its good to have others views....I hope?! Thanks again for all of your help - I really appreciate it.x
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Old 07-28-2013, 05:05 AM #16
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So, I saw your pictures on a larger screen. There is definitely a difference. We should never discount subtle in MG as everyone knows subtle can change rapidly and dangerously (especially for those with bulbar/respiratory issues.)

Now about the neuros. No.1 I would get rid of as whilst you don't know for sure he could be jeopardizing your health. I really do wonder what alternative strategies and diagnostic suggestions this neuro has for ptosis and facial muscle weakness that has diurnal fluctuation, is relieved with rest and an ice pack and someone that hasnt, I presume, had all the necessary tests to be able to rule out MG completely?

I have to sign off for a bit now but will check in a few weeks to see how things are going with your diagnostic process and everyone else's progress

Warmest wishes and encouragement from

Anacrusis

Last edited by Anacrusis; 07-28-2013 at 06:37 AM.
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