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Lower Eyelid problem?

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Old 09-01-2018, 08:28 AM   #1
winic1
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Default Lower Eyelid problem?

I don't really have much problem with ptosis of my upper eyelids, but recently my right lower eyelid is sagging down and away, especially at the outer part (farther from nose part), especially later in the day or after working on the computer (making my eyes work, which they generally don't do well).

Any chance this could be an MG thing, or am I developing yet another eye problem to add to my collection?
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Old 09-01-2018, 03:35 PM   #2
AnnieB3
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There are muscles below the eyes as well. If the lower eye muscles become worse after an activity, as you said, then they are fatigued from MG. So, yes, this is probably MG!

It wouldn't hurt to be checked out by an eye doctor, if there is a change in your vision.

Some eye changes (i.e., larger eye area) can be from Grave's disease, for example.

About two weeks after my MG crisis, I was putting some makeup on for the 2-week followup. I was holding a mirror with my left hand for only about 5 minutes. My left hand contorted so badly that it didn't recover for quite a while. How MG affects us depends upon the relative stability of our condition plus the intensity of whatever activity we are doing and for how long. Sounds like a mathematical equation, but MG is not predictable.

You could try having a small fan (like the Travelon ones that sit on the table or can be handheld) blowing on your face while at the computer. Also, turning down the light on the computer might help. If you can, rest your eyes periodically.

I hope that helps.


Annie
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Old 09-03-2018, 11:01 AM   #3
winic1
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I practically live at my various ophthalmologists (since they specialize, I have one for each problem....). If they gave out frequent flier miles, I'd be traveling around the globe for about the tenth time by now. If they gave out toasters and blenders like banks used to, I'd have a warehouse full. During one phase, I was at the office so often we were joking about them giving me one of the small rooms in the back to live in.

Will be calling them tomorrow. Same eye is now acting so overworked, that the muscles on top are sore. Sore to the touch, not just movement. Gets better with hours of rest, as in patch the eye closed, but that's not so good for doing everything else in life, as this is my dominant eye and the other eye has distortion problems as well, and my balance is not good to begin with, and....

Just a barrel of fun, isn't it.
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Old 09-03-2018, 12:34 PM   #4
AnnieB3
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No, MG is definitely not fun. And even when MG is stable, the disease can still surprise us. I'm glad you have eye doctors who help you!

There's only so much that can be done with the eye muscles in MG. Some people on immunosuppressants don't have issues. Pred only does so much, and hurts so much more. When the eyes are worse, that's a sign that MG is worse elsewhere.

Also, due to the pressure on the eye, you might be prone to retinal issues. So I hope you will seek out care if you see any floaters.

I know this sounds like a broken record, but if you haven't already had your B12 checked, please do. Sore to the touch sounds like a nerve issue (or inflammation).

Is the balance issue from MG? Might you have something else going on? Don't assume all symptoms are from MG.

I wish I had never heard of MG. Sure, some people do great. But its the unrelenting nature of this illness that is so hard to cope with day in and day out. A great attitude helps. But that's kind of like being in denial! I'm grateful there are people who are unaffected by MG. But there are a lot of people who continue to struggle. (Rant over).

I hope you will find some relief!


Annie
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Old 09-04-2018, 12:08 AM   #5
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The slightly dizzy/balance thing started long ago, and after extensive, very unpleasant testing, they concluded it's in my brain, not my ears, not my eyes. So sorry, nothing to be done, go have a nice life. Combine that with weak muscles, and mysteriously swelling, self-spraining, painful, tendon-splitting, failing joints (but not rheumatoid arthritis, blood tests don't show it) and wonky eyesight, oh, it's a barrel of monkeys worth of fun.

I've got five 60g pills of mestinon a day. That's it. Neurologist won't give any more, won't do anything more. She doesn't even know (her own words) if that much is safe. (Yet then she tried to switch me to two 180mg ER pyridostigmine a day, which, of course, didn't work well. Um, Doc, 5x60=300mg, but 2x180=360mg, so how can you think the first is too much and unsafe...??!)

Mestinon works. Miracle drug for me. It works. Casual acquaintances comment on how much better I look when I am on it. But....

Officially, I am not even diagnosed. She won't call it MG because I don't have a positive AChR or MuSK, and nothing really shows on the EMG. She's never heard of LRP4, nor is she interested in looking it up, because I've told her about it twice so far, and she just says "I don't know anything about that."

She sent me to a fancy neurologist at an Ivy League university health system nearby, to have him do the diagnosis. Only, he won't diagnose without a positive test on something. He won't speculate on what else it could be. He won't explain what else it could be. He won't tell me even IF there are other avenues to investigate if the LRP4 test comes back negative. He won't tell me IF there are other doctors or places he'd recommend I go to if he decides it's not MG. When asked what it could be if not MG, he puffed up and variously spouted things like, "I'M just a consultant" (since first mentioned neurologist sent me to him for diagnosis) and "Well, this IS the MG research center" (meaning for MG only, and ONLY MG, nothing else.) I still have to fight the LRP4 test through my stupid insurance before I can get it done, and I haven't even started. Fancy neurologist is a jack*ss of extreme magnitudes, and I'm not going back to him. (you had to be there. Unreal. not worth the effort of another trip, let alone I'm not letting him make more money off me for doing nothing.)

Besides, I never test positive for anything. never. No matter how many symptoms, no matter how well it fits, nothing ever shows up in my blood. Never. According to my tests, I'm healthy as a horse. If only that damn horse would quit kicking me so hard....

In five years, last kid will be out of college and I'll be able to save up to go to the Mayo Clinic or the Cleveland Clinic and have them figure me out. In one year, we will be relocating 700 miles away because of hubby's job, and maybe there will be decent doctors there. Can't be any worse.....

Eye doctors here are mostly good. Going to miss them when we move.
Had glaucoma surgery on one eye in February, still on steroid eye drops because I have this insane tendency to scar, and scar tissue will destroy the glaucoma surgery. Doc said this past month that finally the scarring is decreasing. Come back in three months, still use the steroid drops. Oh, and you are getting a cataract in that eye that you should consider getting done in the next year. No kidding, six months plus of steroid drops will do that to you. But cataracts make cloudy, duller vision, and are easily handled with simple surgery. Glaucoma makes the lights go out, permanent blindness, permanent blackness, so....an accelerated cataract is just fine with me.

Will remember to call eye doctors (not sure which one will handle this, specialists are SO picky) in the morning. But several hours of complete rest by taping it shut worked wonders on the muscle soreness. So, probably I'm just fine. Fine and dandy, that's me. I got no problems. Except my attitude. I'm told I have a really bad attitude towards doctors. I tell them that's that how I get by, living on my really bad attitude. They don't quite know what to make of that...
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Old 09-09-2018, 04:38 PM   #6
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I'm sorry if you've already been round and round this block, but have you explored the possibility of Ehlers-Danlos and POTS? I don't know whether there is a correlation between those two, but I have heard them connected with each other before--and also with MG or MG-like symptoms. When you said dizziness and balance issues, and then mentioned self-spraining joints in the next breath, that's where my mind went.

Abby


Quote:
Originally Posted by winic1 View Post
The slightly dizzy/balance thing started long ago, and after extensive, very unpleasant testing, they concluded it's in my brain, not my ears, not my eyes. So sorry, nothing to be done, go have a nice life. Combine that with weak muscles, and mysteriously swelling, self-spraining, painful, tendon-splitting, failing joints (but not rheumatoid arthritis, blood tests don't show it) and wonky eyesight, oh, it's a barrel of monkeys worth of fun.

I've got five 60g pills of mestinon a day. That's it. Neurologist won't give any more, won't do anything more. She doesn't even know (her own words) if that much is safe. (Yet then she tried to switch me to two 180mg ER pyridostigmine a day, which, of course, didn't work well. Um, Doc, 5x60=300mg, but 2x180=360mg, so how can you think the first is too much and unsafe...??!)

Mestinon works. Miracle drug for me. It works. Casual acquaintances comment on how much better I look when I am on it. But....

Officially, I am not even diagnosed. She won't call it MG because I don't have a positive AChR or MuSK, and nothing really shows on the EMG. She's never heard of LRP4, nor is she interested in looking it up, because I've told her about it twice so far, and she just says "I don't know anything about that."

She sent me to a fancy neurologist at an Ivy League university health system nearby, to have him do the diagnosis. Only, he won't diagnose without a positive test on something. He won't speculate on what else it could be. He won't explain what else it could be. He won't tell me even IF there are other avenues to investigate if the LRP4 test comes back negative. He won't tell me IF there are other doctors or places he'd recommend I go to if he decides it's not MG. When asked what it could be if not MG, he puffed up and variously spouted things like, "I'M just a consultant" (since first mentioned neurologist sent me to him for diagnosis) and "Well, this IS the MG research center" (meaning for MG only, and ONLY MG, nothing else.) I still have to fight the LRP4 test through my stupid insurance before I can get it done, and I haven't even started. Fancy neurologist is a jack*ss of extreme magnitudes, and I'm not going back to him. (you had to be there. Unreal. not worth the effort of another trip, let alone I'm not letting him make more money off me for doing nothing.)

Besides, I never test positive for anything. never. No matter how many symptoms, no matter how well it fits, nothing ever shows up in my blood. Never. According to my tests, I'm healthy as a horse. If only that damn horse would quit kicking me so hard....

In five years, last kid will be out of college and I'll be able to save up to go to the Mayo Clinic or the Cleveland Clinic and have them figure me out. In one year, we will be relocating 700 miles away because of hubby's job, and maybe there will be decent doctors there. Can't be any worse.....

Eye doctors here are mostly good. Going to miss them when we move.
Had glaucoma surgery on one eye in February, still on steroid eye drops because I have this insane tendency to scar, and scar tissue will destroy the glaucoma surgery. Doc said this past month that finally the scarring is decreasing. Come back in three months, still use the steroid drops. Oh, and you are getting a cataract in that eye that you should consider getting done in the next year. No kidding, six months plus of steroid drops will do that to you. But cataracts make cloudy, duller vision, and are easily handled with simple surgery. Glaucoma makes the lights go out, permanent blindness, permanent blackness, so....an accelerated cataract is just fine with me.

Will remember to call eye doctors (not sure which one will handle this, specialists are SO picky) in the morning. But several hours of complete rest by taping it shut worked wonders on the muscle soreness. So, probably I'm just fine. Fine and dandy, that's me. I got no problems. Except my attitude. I'm told I have a really bad attitude towards doctors. I tell them that's that how I get by, living on my really bad attitude. They don't quite know what to make of that...
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Old 09-09-2018, 11:16 PM   #7
winic1
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I have a decent cardiologist, so no POTS. The slight dizzy thing started well over a decade ago (maybe 12-13 years ago?), the joint self-destruction just two and a half ago. As far as Ehlers Dansos, no one has mentioned it or looked into it. My bloodwork is fine. Around here, when your bloodwork is fine, you are fine. Seriously, if there is nothing wrong with your bloodwork, the office has a nurse call you and tell you that your bloodwork is fine. Period. If you ask, what about my symptoms/pain/problems/etc, if you have a good nurse, she says, oh? are you still having symptoms? you can make another appointment if you want.... If you don't have the good nurse, you get, the doctor just told me to tell you your bloodwork is fine.

Went back to my gp last week, since one of the specialists he sent me to was actually a human being, but what he usually does didn't help at all (physiatrist who believes in supplements and pt) and so that doc had called and talked to the gp, who was supposed to call me, but didn't, until I followed up and got the oh? you are still having symptoms? you can make an appointment....

GP told me that I was beyond his expertise and that's why he kept sending me out to specialists. Only, all they do is read your test results. AND...if doc sends you to specialist saying, tell me if it's mg, the specialist will only decide yes or no. period. doc sends you out saying, tell me if it's rheumatoid arthritis, specialist looks at bloodwork for RA only, (up to 38% of people don't test positive for several years, during which joint damage occurs) and says no. (my fingers are now starting to go crooked, so bloodwork or not, maaaayyyybeeee....only they booked the next available appointment, for December 24th. Four months wait. Which is better than trying for an endocrinologist around here--7 months or more for them.) Ankle doctor said he thinks I have synovial inflammation, but without a positive bloodtest or a big swollen ankle he can stick a needle into to sample fluid and get a positive test, no diagnosis, no treatment. Which would fall under the rheumatologists, but they were only asked about RA and so won't look for anything else unless I go back with a new referral for a new potential disease and then they will evaluate for that one only, but my bloodwork is always fine. And my gp made it very clear he doesn't want to see me for any of this difficult stuff anymore.

I don't even HAVE mg. No positive bloodtest, no positive emg (which I now understand is possibly because the room was freezing cold, so cold that even under the blanket they gave me, I was cold.) So no one will diagnose it. Pyridostigmine works. IT WORKS. All the symptoms fit. But their little computer system doesn't have a box to click for "seronegative mg", so I have nothing in my records indicating that I have MG or that I potentially have MG. And the last few weeks, muscle weakness is getting worse, eyes are getting worse, and breathing is getting harder. I am getting worried. And when I end up in our little local ER, they will kill me. Pretty good chance of them doing that to any patient, anyway, let alone someone unique and hypersensitive like me.

In a year, we are moving to Charlotte, NC. Hoping for better doctors there. In 5 years, last kid is out of college and I can save up to go to the Mayo clinic or Cleveland clinic. Just gotta make it until then.

Last edited by winic1; 09-10-2018 at 07:40 AM.
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Old 09-09-2018, 11:31 PM   #8
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Okay, so started looking it up. My joints have never been hypermobile, not in the least. With the most recent ankle thing, the doc said my bones were beautiful, actually, and there was no looseness at all in the ankle. They are just swelling up and getting extremely painful, over NOTHING. Have had a tendon or two split DOING NOTHING, unless lifting my arm off my lap into the air is doing something worthy of splitting the ECU. The first big ankle problem, where I ended up in a boot for a month, having done nothing to it, the docs all swore that I actually had injured it several days before without realizing it, and it just waited several days to swell up and get sore. Really. That was their story and they're still sticking to it. Isn't it great to know that you can badly sprain your ankle, but not feel it or have any pain or swelling or indication of injury until four to seven days later?

I am not making this stuff up. When the latest corporation to buy out our hospital and medical systems moved in, all the good doctors left. Left the state, really. The ones left are the ones who couldn't get new jobs, or disrupt their families. The corporate rules have them clock in and out their patients, and they get disciplined if they waste too much time on treating people. They are not allowed to change or contradict a coworker (I got that straight from a manager's mouth when she called to cancel my appointment with another doc in the same group as one I had seen already but he was such a jerk I wanted another, nope, not allowed), so there's no second opinions or review of anything. Not allowed to diagnose without confirming lab work. Not allowed to refer to doctors outside the system unless there is no equivalent doc owned by the system. Not allowed to diagnose something that isn't coded in the system, like sero-negative mg. It just sucks.
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Old 09-10-2018, 01:40 PM   #9
AnnieB3
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Good thought, Abby.

I was wondering about lupus or Lymes. Have you been tested for those?

Annie
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Old 09-10-2018, 06:03 PM   #10
winic1
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Quote:
Originally Posted by AnnieB3 View Post
Good thought, Abby.

I was wondering about lupus or Lymes. Have you been tested for those?

Annie
Been tested for Lymes many times. I would assume Lupus testing is all those same things that go with looking for RA.

Once, about a year and almost a half ago, my sed rate was really high, 130, for no good reason. And once, the rheumatoid factor thing was just barely positive, and there were results/description after the sub-tests/breakdown things they do, talking about nucleus appearance or something. But after that, everything is fine. My bloodwork is always fine. I'm healthy as a friggin' horse.

Although--I have thalassemia minor, where you are heterozygous for thalassemia, so you carry the trait but with no problems, other than your red blood cells are smaller than normal, but you have more than normal of them, so it all evens out. I'm Italian on my mother's side, and other family members have been found with this, also; so doctors have never officially tested for it, they are satisfied that's what it is. And I have long wondered if maybe the slightly funny blood composition from thal minor might have some effect on the other results, so that you get the false negatives or close to but not quite out of range results. But I haven't been able to find anything about that, and I'm having such eye problems that I really can't go looking for info.
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