Occular symptoms?
 

Hi again,

Please forgive me but I've got a ton of questions! I notice that a lot of people have the eyelid drop. I don't. Well, not that *I* know of. LOL. The eye symptoms I have is loss of depth perception, which was one of the first things that happened to me. The other is, well, I don't know if it's double vision but I get one eye that will usually get blurry. I'll have to cover that eye so that I can see.
I'm actually not sure if I mentioned that to the doctor or not!! I am SO afraid of the docs thinking I'm CRAZY...... UGH.

Hope this helps
 

Hi YaYa - I have had Ms/Mg sysmptoms for years and it was only last year-August-that I developed the droopy eyelids/blurred vision and double vertical vision.

Check the double vision to see if it is horizontal or vertical - for ex. the TV is side by side (horzontal) or the TV is on top of each other (vertical)

Search through the threads as there are other areas where vision has been discussed.

As for me-the droopyness comes on when I am getting very fatigued. It has helped my family n friends out tremendously and they can clue me in to when my fatigue is starting to get to the point of overwhelming as they can visually see the fatigue by the degree to which my eye lids are drooping.

A cool cloth (ice chips if u can tolerate) over the eyes will decrease the amount of drooping n is usually pretty indicative if the drooping is from MG versus something else like a stroke.

Be sure n rest -stop everything n rest when the eyes start to drop-its like a warning signal!

I hope this helped some - also the blurryness for me gets only bad when I become fatigue. Rest will restore the strength but mestinon has been the savior drug of my life for right now. Keeps me moving on the go.

forgot to add: Be sure and go see your eye doctor as simple vision problems can cause blurred vision. DO u have other symptoms besides the eyes

Hi,

The vision is weird. I don't really know if it's 'double vision' as much as one eye get's totally blurry and I have to close it to see. I'm not sure what things look like when I don't close it as it's almost painful to keep it open. So double vision, horizontal, vertical..... I'm just not sure! I can feel a kind of.... well, pressure for lack of a better word, in the eye that's blurry and it's 99% of the time in my right eye.

I have a TON of other symptoms that have been going on for years. Muscle fatigue in my hands, arms, legs, feet, neck...... Swallowing is a problem and has gotten rapidly worse over the last month. I have memory loss, as well as I've lost my depth perception... poor balance, and on and on and on I could go. This has been a 4 year journey and I'm tired... just so tired. People think I'm lazy, but I'm not. I'm a type a personality and I've totally had to re-learn to become another type of person. I don't even hardly drive anymore unless I absolutely have to. <sigh>

OH! Does anyone else have a LACK of a gag reflex???? My doctor said I have NO gag reflex and I have NO idea what that means!! lol

Hi, YaYa. Do you have another name or do you want us to call you by that?

MG double vision is what is called "binocular" double vision. When you close one eye, the double vision goes away. Double vision can look like "blurry" vision. Take your pointer finger and put it about arms length out from your face. Slowly move it towards your face. "Normal" people can adjust to this change and will not see double anywhere in their vision. You may only see two fingers on the sides on some days and in front on others. It all depends upon which muscles are weak, causing your eyes to focus out of sync.

A neuro-ophthalmologist can help assess your DV and any fatigable ptosis.

A lack of gag reflex can be indicative of MG. We have 640 skeletal muscles and they can all get weak and not work as well.

You should probably ask your primary doctor, if you haven't already, to make sure you don't have any thyroid or other hormonal issues, vitamin D, vitamin B12, a metabolic panel, etc. Get your BP and a baseline ECG checked. You can go get breathing tests done by a pulmonologist to see if you have signs of chest muscle weakness (MIP and MEP are the tests that some docs don't run but need to in MG).

There are so many ways to approach figuring MG out, including photos of your face.

Crazy is a label that should be reserved for doctors too lazy to help someone who has been sick for FOUR YEARS! ;) You are not crazy.

Did they do both the Acetylcholine and MuSK antibody tests?

I hope you do get some answers soon. Sometimes you have to see more than one doctor in order to gather up more evidence. It's worth it. Tiring but worth it.

Annie

From time to time, I have blurriness in one eye but not the whole eye. It's as if, someone has blocked out my vision using the head of a needle, which is enough to distort my vision, when it comes to reading.

Plus, I knew that my eyes don't team (work together) or converge (go in), when I play tennis, I see a ball and follow it with my left eye, but my right eye takes too long to follow the image and send the message to my brain.

In short, from time to time, I miss balls. If I didn't play tennis, I do not think I would notice the weakness in my eye muscle.

Once, I was told I had Bells Palsy, because my right eye drooped for about two days. Unfortunately my scheduled eye appointment was after my droopy eye returned to normal, it was then the eye doctor noticed I had weak muscles in my right eye but otherwise I had perfect vision.

Haha, I guess I should figure out where the signature thing is. lol. My name is Kim, and you're more than welcome to call me that, OR YaYa, whichever! lolol!!
That is just what happens. One eye get's blurry and I have to close it to see. I did what you said... or tried to rather. I couldn't do it very well. I get to a certain point and it's painful. If I try to keep going it turns into two fingers. lol. When the EMG doctor did the thing where he wanted me to look up at his finger, it was painful to hold my eyes up there. Maybe it's painful for everyone, but then my husband said my eyes, and head started, kind of jerking I guess. Not sure how to describe that.

Here's what's been done. I was at one neuro for 3 years (ish) after I went to my gp because I'd forgotten my son at school twice. It wasn't that I'd forgotten to go, it was that there wasn't any presence of that I even HAD to go. The school called and I was shocked. It scared me a lot, and the memory stuff was one of my first symptoms and the ONLY one that isn't explained by MG. So first neuro did tons of bloodwork, and I can't tell you what he did other than some of it the lab had to come to my home to get. I should probably get those records...... Anyhow, he did an EMG and a muscle biopsy. EMG showed positive somethings and that's why they did the biopsy. They were looking for Mitochondrial Myopathy at the time. Biopsy came back negative for Mito, and at that time the neuro was at a loss. It's obvious that something is wrong but he had done so many tests that he just didn't know where to go. So he sent me to UC Davis.
There the neuro ran a panel of blood, and I do believe the MG blood test was performed. I 'believe' it came back fine, but I can't remember specifically what she said. I have requested the records, and have an appt with her in a couple weeks.
She also had me go to a speech doctor for the gag reflex thing and my swallowing problems. (Which have been getting worse and worse rapidly. I now often have to catch my spit from going down the 'wrong pipe' and often have to cough to get it out.) and also had me do another emg. The emg doc is the one who said he thought I had MG and said something about decriments and wanting to do a fine needle emg (I think that's what it's called. lol)

I know they've done thyroid and b-12 at some point, but it's all such a blur now. Man I've got to find some way to keep track... only I'm not sure what I need to keep track of. lol. UGH..

I'm SO happy to have you guys. It's been a long lonely road where nobody get's it.

See, I don't get the eye droopy thing. At least, I don't think I do. lol. The first thing that started with my eyes, was my loss of depth perception. Then the, what appears to be, double vision. I thought my eyes were getting worse and went in to the eye doctor, but my prescription was the same.

I don't know MomYaYa.

Personally, I would ask for a MRI with contrast of the brain to rule out something more serious. You mentioned pain in holding your eyes to follow your doctor's finger, and I wouldn't use that descriptor for MG, at least not on a constant basis.

Morning guys! For me, the eye pain is similar to when I have to use my arm muscles. After straining to use the arm muscle ( like hair dryer, emptying dishes from dishwasher and raising dish up to cupboard) well, after the 2nd to 3rd time, the muscle starts to really hurt in my arm.

Its the same thing with the eye muscle. To hold your eye staring up at the finger, if it is MG the eye muscle weakens (with or without pain) and the eye lid will start drooping or the eye muscle will scream out PAIN!!

Sometimes mine comes from inflammation behind the eye.

There can be SOOO many reasons.

Get a good neuro opthamologist to do a thorough exam.

I also have less problems with my eyes when I am well rested. The fatigue really shows in the eye lid droopiness.

Hope this sheds a little info.;)

I too have primarily ocular symptoms. I don't have any pain though. I notice it particularly when I drive. After about 10-15 minutes, especially if it's a bright sunny day, my eyes get so tired I just want to close them. It's an effort to keep them open and focus on driving. If I overdo things, my DV will return (vertical), so I just up the Mestinon, and take a rest.

Ocular Issues
 

Hi all,
It is I know hard to explain the distortion with the ocular mg., the other night i was driving home in the dark on a highway and they had all these new reflectors on the guard rail and center lline., I was terrified it was like I was looking thru a kaliedscope. I will never drive at night again. I always have some blurry fuzzy visual issues and I know it is MG I have been to eye physicians and everything is fine. I am now having some swallowing and choking difficulties, I am realizing I also do not have much of a gag reflex., scary. The neurologist feels that the pneumonia I had a couple of weeks ago was from aspiration.
Right now I am getting dental work done., my how it wears me out especially after all day at work. I also have to have oral surgery in the near future and I am petrified.
Take Care everyone

Momyaya, the vision this is a question I have struggled with too. And honestly the docs have been the ones that have left me feeling crazy not from what I have said around my eyes. The first doc I saw tho was very nice and said it was MG clearly.

About the symptoms I think I know what you mean. Increased blurring of a different kind was the first thing I noticed. But I also have cataracts and dry eye so it was hard to be sure. It seemed like something else. It did seem to be worse during the course of the day like my muscle weakness.

Then when it hit when it changed to worse one week along with my breathing affecting my ability to drive I knew something else was going on. When I was seen the doc did this test that showed me my vision was doubling when I looked to the sides. But he had to show me this by a test. One eye has to be covered to do it.

The thing that really wasnt addressed or discussed was what happens to my eyes when I try to track traffic. The part that one doesnt notice till you are trying to look back and forth to the side streets. That is awful!! It seems obvious to me that my eyes arent traveling fast enough. I look over to one side and then when I try to move back WHEW!! It feels like I am in a fun house. I have actually gotten dizziness from it.

Annie59

Annie59, Can you explain what you mean by "One eye has to be covered to do it."

MG double vision is called "binocular" double vision. When you close one eye, it goes away. If yours does not go away by closing one eye, it is NOT caused by MG.

Since you are gathering info for your next doctoring adventure, I thought I should clarify that for you.

Annie

Yes I am sure I got that mixed up. My brain is so burned out. He exammined me so fast I cant really tell you for sure how he did it. I am seeing him this Wednesday so I plan to have him explain things to me better ( I need a recorder for appointments). This clinic is not the average clinic. It is were I get my cataracts done. It is Wolfe Clinic and they have a big reputation. I intentionally didnt go to my eye glasses doc as I needed the Wolfe Clinic answer as I knew it would hold more power. He said I had all the indications of Mg including droop that was mild but obvious in right eye.

He did have me cover one and then the other. He used something else and I dont know what it was. But in his room was the first time he was able to illustrate to me what I get when I look to the side espcially the left is the much worse is double. Maybe it was because he used an small object. That is what the neuro optho did. Used a tiny red pen-lite thing. When I am not driving I have left vision to the side change when I look out my big window to my HUGE lovely tree that is now golden. This kind of object to me is blurry. But I think it is because something like that would be hard to see as double. Maybe I am not making sense here.

I realized I got into a discussion with the neuro this week around my eyes and didnt know how to answer. I told the students that the test didnt rule out MG and why I felt that way. When they said I was wrong and I asked them to explain they went into something about a prism which I have no idea about. I may have made it worse as I said he said a prism wouldnt help. I dont think that is what they meant. I was out of my area. Somethings I research and know enough about to discuss. Not this. I do trust this doc and since the myositis in my left is gone or near gone that wont I hope be a confusing factor as it was at the university. I got the injection or prostigmine to sort out if the double vision was myositis or MG. I have pain come on around my eye that became worse in July. The pain and the double vision fit for orbital myositis. I sure wish it wasnt this complicated as the vision issue would make things more clear for MG for sure.

Annie 59

[QUOTE=AnnieB3;715520]Annie59, Can you explain what you mean by "One eye has to be covered to do it."

So this morning I was graced by the obvious presence of the double vision. Mostly it's just been very blurry, which I could correct by covering one eye. Usually I have to cover each eye to determine which one I'll get the best vision out of. Today was the same, but I definitely saw double. It was the up and down one though, and I thought I read somewhere that that's not MG double vision? I checked the eyes, covered up the one that had the double vision and went about until it stopped.

Can anyone help me with that?

Hi Kim!
Double vision with MG can be either vertical (one image above or below the real image) or horizontal (side by side), or a little of both. And it can change frequently. Mine is mostly vertical, but tends to have a horizontal component when I get real tired.

Cate

Kim, Is there any way you could see a neuro opthamologist? They would probably be able to tell you the cause of your eye problems. Don't be afraid to tell your doctors about your symptoms.

Annie, You said:

The thing that really wasnt addressed or discussed was what happens to my eyes when I try to track traffic. The part that one doesnt notice till you are trying to look back and forth to the side streets. That is awful!! It seems obvious to me that my eyes arent traveling fast enough. I look over to one side and then when I try to move back WHEW!! It feels like I am in a fun house. I have actually gotten dizziness from it.

I have this exact problem!! I've never seen anyone describe what I experience so accurately! My ENT called it Optikenitic Nystagmus. I'm not sure if that's what's really going on or not. About the only time this happens to me is when I'm in the car. It doesn't matter if I'm driving or not. I notice it more when I'm PMSing . Strange, I know.

Good luck everyone!

Shalynn, the thing for me that attaches this to MG is that it didnt come on till one long weekend when all my MG type symptoms got alot worse. My breathing and the vision wwere esp noticeable. I was just coming off 2 weeks of unusually high activity trying to restart the many dental appointments that were needed. Then on that Friday I had seen my internist at the univeristy and it was a longer appointment. By Monday I tried to drive a few blocks to the grocery store and there it was and had never been before. I also had 'the rock' in my diaphragm like I get when my breathing is really really worse.

Annie59