Let's Throw In A Droopy Eyelid Too

[4rhl1981]

my right eye is like half close all the time. I also have double vision in that eye, funny thing is it has never twitched unlike my left eye lid that twitches all the time. I can feel that its like at half mass.

 

[Zaphoon]

Renee,

I'm betting that's what the cause may be for me, too. There is just this small, annoying fold of skin over my right eye. When I raise my eyelids, the right side goes up but takes more effort. At a relaxed position, you can tell that my right eyelid has a slight sag and extra fold of skin to it.

The lack of strength in my arms is troubling. I'm finding it difficult to do things that should be easy (i.e. lift grand piano lids, plug things in to electrical wall outlets, fill my coffee cup from the coffee pot, etc.). It doesn't get better, only worse. The strength in my arms doesn't return - they just get a little weaker. With MG, I would expect to have periods of regaining strength after resting.

 

[laurel]

Hi Kim,
The reflexes can be brisk in clinically weak muscles in MG. But I believe that the disease is advanced if there is clinical weakness in the muscles--so brisk reflexes wouldn't be present unless a person was untreated for a lengthy period before being diagnosed. Also, grading reflexes can be quite subjective. And also a very tense person, can make an accurate assessment of reflexes difficult.
Laurel

 

[Zaphoon]

Laurel,

Thanks for that input. I've witnessed how subjective grading reflexes can be. If all this was just a case of brisk reflexes, no harm done, right?

What concerns me the most is the loss of strength; it can't continue. I'm already having too much difficulty with my work as is. I hope this isn't too much of a whine (give me some cheese with it if so).

Brenda, I'm with you on the pinched nerve. I'm a big panzy!

Maybe this would be easier to deal with if I knew what it was I was dealing with.:idea:

 

[lydia]

Z,

I understand your frustration about the continuing weakness and your ability to do your job. I hope that "they" take your self-reports about your declining strength as manifested in your day-to-day job related activities seriously, and don't rely on your clinical exam alone. (I don't remember, do you have the so called neuro-confirmed weakness....? In other words, can a tiny little fairy; I mean neuro, whoop your butt? :smile

I have more issues doing my hobbies (DIY wannabe) than I do with my employment (lazy professor) and sometimes suspect that if I were a man who worked construction or something who presented with an inability to continue in my occupation I would be taken a lot more seriously.

For example, my GP when testing my reflexes, responded with a Keanu Reeves-like, " whooaaa, no one can say you don't have good reflexes!"

Lydia

 

[planningguy]

Zaphoon - When you describe your eye the way you did (ie the extra fold of skin), it is exactly what has happened with my eyes (right worse than left). Around the time I first noticed something was up with my swallow, I also noticed something intruding into my field of vision. I finally worked out that it was the skin on the lower part of my brow "sagging" into view. For me it has been acompanied by an odd feeling on my forehead. Can't think of a good way to describe it at the moment.

Lydia - I hear you on the strength thing. I have an office job, and even the beefiest file I handle probably doesn't weigh the same as a piano lid. I get worried some days that the 9 year old is suddenly going to kick my butt wrestling. I was hoping for late teens early 20's before that happens.

Robert

 

[sdsyd]

Kim- have you had the MG panels drawn? Mine took several weeks to get results back and they did all of the "lab draws" possibly to possibly identify it. But in a certain percentage of people the antibodies never show up. This is still what I am hoping I have when I go through my symptoms and try to put them in diagnosed boxes in my head...like casting ballots... and would like to have the tensilon test done. It is manageable from what I've read and seen.

Did anyone tell you that one of the 7 dwarves was created in the likeness of someone with MG? SLEEPY! It is thought he was created in the likeness of one of Walt Disneys friends who had the disease.

 

[BethU]

Robert, Kim et al ... here is an illustration of a droopy eyelid (I believe it's an MG illustration, but am not sure). It is the part of the eyelid that covers the eye while sleeping that droops ... not the skin from the fold up to the eyebrow. (When that sags, it's old age. :-() I've seen much more extreme photos, but this was all I could find quickly, cause I gotta run for an MRI.

http://prevention.healthline.com/adamimage?contentId=1-003035&id=1111

 

[planningguy]

What if the skin sags when you're 32 I'm not that old yet

Robert

 

[CB1977]

My skin is sagging, and Im 31. I have noticed that my browl over both eyes is getting lower and lower. Really, my whole face looks different, from the corners of my eys to the corners of my mouth. Its like the miuscles in my face are not as taught as they were a year ago and this is causing everything to kind of drop. I am sure that the stiffness feeling in my face has something to do with it.

 

[BethU]

Well, guys ... I had my first gray hair at 28, and I first noticed the effects of gravity on my face (and not in a good way) in my mid-thirties. Faces change, and sagging skin and looser muscles are part of it.

Let me rephrase my comment to a more PC version. not the skin from the fold up to the eyebrow. (When that sags, it's the unfolding of the bloom of maturity and a mark of your graceful approach to the first unsolicited AARP magazine arriving in your mailbox, which, if you're anything like me, will probably give you heart failure.)

"I fought the law of gravity, and the law won ..."

 

[Zaphoon]

Beth,

You are priceless! Better than a fairy godmother, even!

I am knocking MG off my list for two reasons.

#1. I don't like the idea of it being on my list in the first place

#2. My EYEBROW has the sag/droop and not my eyelid!

Besides, I really like the idea of "the unfolding bloom of maturity" effect.

Priceless!

Zaphoon

 

[rose]

OK, now for the flip side of the sag debate. I tried my darndest to convince my rheumatologist that I had Scleroderma because I didn't have many wrinkles or much sagging. (a hallmark for systemic scleroderma) I also had some hard skin on one finger for many years.

It was a no go. I was serious by the way, because they kept saying "autoimmune" to me, and the Sjögren's continued to look less likely as a cause. So, this was my experience with trying to make my symptoms fit a disease.

Men generally do have less collagen and less fat under the skin, so skin might age faster than their spouses, just because women are protected with the hormones and all that go with them, good and not so much. 8)

 

[Zaphoon]

The MRI went well and the lady taking the pictures took some good ones. The dye injection made me a bit queezy but I managed to stay manly through it!

Oh, the MRI lady did say that spinal cord tears could look and have similar effects to spinal cord lesions. When I asked her how a "tear" was fixed, she said surgery.

Okay, I'm still looking for a few, good pinched nerves.

 

[BethU]

update on tube

This is as good a thread as any to hijack ...

My tube will be implanted tomorrow a.m. at about 9, and I will go home the same day (assuming all goes well, but with me and hospitals, ya never know). I assume they won't let me take my light/writer, so I will have Paul print out YES on my right palm with a marker so I can flash it to communicate. I still can't believe that people can't tell if I'm saying "yes" or "no". Cheesh.

Two days in a row medical providers of one sort or another have called me and hung up on me when they couldn't understand me. Yesterday, it was the BiPap person trying to set up an appointment to come out and set it up for me ... but, she said, the problem was they couldn't find a copy of my sleep study. As I was trying to explain that I have ALS not sleep apnea, she hung up. :evil:

I'm sure we will meet again. In case reincarnation is true, I'm making a list of those I'd like to chat with next time around ... Next time, they'll have ALS and I'll be the stupid jerk on the phone. :lol: