[MomYaYa]

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.

[TRESA]

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.

[TRESA]

Originally Posted by TRESA

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

[MomYaYa]

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

[AnnieB3]

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

[Poetist]

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.

[MomYaYa]

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.

Originally Posted by AnnieB3

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

[MomYaYa]

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.

Originally Posted by Poetist

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.

[Poetist]

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.

[TRESA]

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.