[Poorman]

I could write a book about this but I’ll try to be brief. It started about 25 years ago during a cross country motorcycle race. My vision went double, after a short rest it would normalize, then after a few miles it would return, over and over again. Went to an optometrist who sent me to a neurologist, MRI looked normal, nobody had any answers.
At first it was just occasional, only when I rode, keep in mind it’s very physical with lots of eye stimulus rushing at you. If I look back over the years my symptoms have been on a steady insidious climb. Symptoms that started only when I rode my motorcycle progressed to riding my bicycle, and then hiking, driving and then this last year it’s almost every afternoon and evening.
Over the years I’ve explained my symptoms to every Doc I come in contact with, at least 5 GP’s 5 different optometrists and anyone else who would listen. The only answer I’ve ever gotten was from my current optometrist, he diagnosed me as having esophoria about seven years ago, we tried prisms with no success. Then last summer it had gotten so bad that we decided maybe I hadn’t given them enough time so we tried another pair, this time I wore them 24/7 for 4 months, my eyes didn’t like them they just made things progressively worse, I gave them up before I hurt myself. I ask him about vision therapy, he said before we did that he wanted to clear me for myasthenia gravis, I said “we talked about that years ago but I don’t have any droopy face” he said yes but “there’s another kind called ocular MG”.
That started me reading everything I could find on the subject. After becoming more self aware I realized my symptoms were very much in line with OMG. I can do something like a short ride one day and have horrible diplopia and then do the same ride the next day and be fine. A couple bad days followed by a couple good days. Always good in the morning almost always symptomatic by evening with those symptoms (diplopia) varying a lot. Exercise really brings it on ESPECIALLY if my eyes are busy reading the ribbon of trail coming at you while traversing single track on a bike. So my OP sent me to a neuro OP. Took over three months to get in. Every test came back negative, they did Acetylcholine, repetitive nerve and single fiber EMG. He ruled out OMG because the tests were negative and he said I’ve had symptom too long for OMG. He ordered an MRI because my diplopia had been the worst in right lateral gaze and he suspected sixth nerve palsy. I’ve never had any symptom other than diplopia and blurr which I think is just very slight diplopia. No ptosis. They did the single fiber EMG on my orbicularis oculi which has never been symptomatic. His nurse called and said the MRI was normal and to have my OP send his notes, he did. After six weeks and I hadn’t heard back, I wrote to them and explained that my worst gaze had changed from right lateral to down gaze and that I had several episodes where left lateral was the worst. I asked that he reconsider OMG and maybe try a trial of prednisone. That was two weeks ago. I’m really tired of the waiting game, my local OP is 100% for a trial of prednisone and is encouraging me to drop the neuro Op and find a local Neuro that would do a trial run. I’m really tired of all the waiting, I’m seriously considering buying prednisone on line and trying it on my own, that’s how discouraged I am with the system! Anyone ever try doing that?

[AnnieB3]

Hi, Poorman.

There are three different antibody tests for MG: AChR (acetylcholine receptor), MuSK, and LRP4. Even if someone tests negative to all three of those, a person can still have MG. MG is a clinical diagnosis that is confirmed with tests. The hallmark of MG is fatigable muscle weakness that improves with drugs or rest.

Don't get steroids online! First of all, that drug would negate any autoimmune findings. You need to prove what is going on first. What someone might do is a Tensilon test, ice pack test, or a trial of Mestinon.

Steroids are not a great drug. Some doctors dole them out as if they are candy. They come with serious side effects and long-term consequences. The drug is very difficult to come off of, mainly because they shut off the adrenal gland function. The adrenal glands tend to not work easily after taking steroids for a long time.

Do you have a copy of all of your test results? If not, get them.

Ptosis is the same as droopy eyelids. Double vision is caused by ptosis. Double vision in MG happens when the muscles around the eye are not working the same way on each side. MG double vision is called binocular DV. When one eye is closed, the double vision goes away.

There is also something called enhanced ptosis. If someone has a dominantly droopy eyelid, pulling up on that one for a few seconds will then cause that eyelid to go up and the other to go down. They can do a seesaw for a bit.

Have you been checked out by a cardiologist? Since this is happening after exercise, one might think MG. But there could be something else going on.

Have you taken photos of your face in the morning and then after an activity?

I don't know what is going on. Only a doctor can determine that. But I do know that throwing a drug at an undiagnosed issues can be dangerous. I can appreciate that this condition is bothering you. But don't make things worse for yourself by taking matters into your own hands. What if steroids make things worse? They affect many systems in the body, including the heart.

Did you see an MG expert?

I hope you can find some answers soon. MG is a disease that many doctors don't really know details about. Unless a doctor sees a great deal of MG patients, they don't know the depth of MG presentation, diagnosis, treatment, etc.

Can we help with anything else?

Annie

[Poorman]

Thanks Annie
The Tensilon, or ice pack tests are of no use because I have no symptoms during office visits, and I never have ptosis, even when my eyes have completely stopped fusing. I've shied away from a Mestinon trial because from what I read it is not very effective on purely ocular MG, less than 10% where as Prednisone is more like 80% helpful. I'm pretty sure my heart is ok as I just spent 2 hrs. chasing 50 f****** cows all over the hillside to get them back in. (I'm 6' 150#) The neuro op that I'm seeing is a 6 hr. drive (one Way), he's at a teaching college and was highly recommended by my local optometrist, I really like the guy a lot personally but they're communication just sucks, it took 4 months to get a first guess and now over 2 months later I'm waiting eagerly for his second guess, even my local op can't get a call back. I might add that my local op is a friend (casual) and really great. Annie, I'm not sure what you mean by "double vision is caused by ptosis" I'm pretty sure all my deficits are with my rectus muscles. Which are brought on by fatigue. I've found that there are two types of fatigue that bring on symptoms, the first is overall body fatigue that you feel at the end of a long days work, you're just tired and ready to sit down. The second is eye fatigue , like a few days ago I was riding a little putt putt bike up a dirt road looking in the dust for tracks of a vandal, after scanning the ground for awhile my vision was so bad I had to stop and rest my eyes, at 20' distance, images were separated by three feet, it resolved 70% after 10 min. When I have both types of fatigue at the same time, it gets awful!
Thanks

[AnnieB3]

That made me laugh! Rectus (abdominal) muscles don't cause eye issues!

Even athletes can have heart issues. And, if you have MG, apnea is also a possible problem. There was a bodyguard here several years back whose MG made him feel as wobbly as a newborn kitten. How in shape someone is doesn't matter when an illness is involved.

I think that semantics are getting in the way here. Fatigue can mean sleepy. But when neurologists use that word, they mean that muscles are weak. Fatigable muscle weakness is the hallmark of MG.

Normal eye muscles, for example, do not fatigue or become weak. If the cause of vision issues is fatigable weak muscles, then the cause is usually MG/CMS/LEMS. A good neuro-ophthalmologist will find double vision upon a specialized exam (and droopy eyelids/ptosis).

Vision issues that are not due to MG do not involve fatigable muscles. There can be "static" muscle weakness that does not come and go, such as that in multiple sclerosis (secondary to nerve damage).

The next time you have vision issues, take a photo of your face. If you don't have droopy eyelids, then the issue might be from something other than MG.

I had ptosis/droopy eyelids my entire life. I did not get diagnosed with MG until I was 41. No one noticed my eyelid droop, but it was clearly in all my photos.

For MG patients, an overall fatigue is when the entire tank of muscle gas (acetylcholine) is running low. For example, if someone with MG goes for a walk (and their MG is not well-controlled), their legs might be weak right away and throughout the next couple of days. But when someone does physical activity, such as chasing cows, many of the 640 skeletal muscles will be overused and losing acetylcholine. That is what causes an overall fatigue, often to the point of the body needing to sleep (or literally putting us to sleep).

Is that what is happening with you? I have no idea.

You say that you are having vision issues, and yet you also say that you are overall fatigued/worn out. I hope the doctors will think about other possible diseases, such as polymyositis.

Mestinon helps if someone hasn't done too much. At some point, Mestinon might not appear to help. But it does help those with MG, even if results can't be seen.

A thyroid problem or diabetes can cause overall fatigue (and eye issues). Many things can. I just think that some more investigating/thinking might be necessary. I'm sure that you'd like to have proof of what is going on, especially before deciding on taking powerful drugs such as steroids.

Might you have a congenital myasthenic syndrome? That's possible. Does anyone else in your family have these issues?

Do you stay hydrated during an activity? Just wondering.

They could do the MuSK or LRP4 antibodies. And with ocular MG, the AChR antibodies don't necessarily show up right away.

I really hope someone can figure out what is going on. Vision issues are not fun. In the meantime, why don't you ask a primary doctor to check your vitamin B12, vitamin D, thyroid, and do a metabolic panel (if they haven't been done already). That certainly couldn't hurt.

Annie

[4-eyes]

Poorman is correct. There are rectus muscles around the eye as well.

Poorman, I have had some of the worst double vision my opto and neuro has ever seen. It is absolutely miserable. Mestinon didn't do much for me, and I'm also allergic to it, so I had to turn to other meds. Once you find "the one" you will appreciate every moment of clear vision. I hope it happens for you soon.

[AnnieB3]

Yeah, 4-eyes, I knew what he meant, but I still found it to be funny! Guess I should have LOL'd that statement.

[Poorman]

Thanks 4-eyes, did you try prednisone? are your symptoms more than just ocular?

Annie
Maybe I should have used the word tired instead of fatigue, I was trying to point out that when I become tired (not sleepy) my symptoms are likely to appear, also when I have a lot of eye movement, as in rapidly changing my focus target, my symptoms are likely to appear, if both are happening my symptoms are almost certain, and will likely become extreme until I stop and rest. I might also add that alcohol has a huge effect, 1 beer and symptoms double, two beers and symptoms triple, I usually stop there!
I think you misread that I was "overall fatigued ,wore out" I'm only that way after extreme exercise or when it's bedtime, which I think is normal.
Yes I try to stay hydrated, I've tried no sugar, lots a sugar, pedialyte, caffeine, protein, all of it, nothing has any effect. I've had all the blood tests you mention, many times, nothing. No family history.
If I have any ptosis it's too subtle to see or notice, I've looked at pictures.
If it is OMG it's only effecting my ocular muscle's, which would be rare I know, I do know for certain that it's something!
My local OP always thought it was esophoria, breaking down and becoming a decompensating esophoria but after much reading I'm pretty sure that would be comitant or equal in all gazes, that's not me. After many years he has now changed his mind and is thinking MG. My long distant neuro OP said after an exam that it was either thyroid eye disease or sixth nerve palsy, both were ruled out by an MRI. I have to question his thinking because wouldn't sixth nerve palsy be a more constant problem and not come and go and be so variable? I really think these Docs are so busy that they just don't have time to really think things thru, if you're not the average, cookie cutter, run of the mill, every day presentation then you're going to find it difficult to get a diagnosis. I'm still up for a trial of prednisone.
Annie, thought you might get a laugh out of this, you seem to have a sense of humor, yesterday after reading your reply one of my cows dropped a calf (gave birth) a cute little hefer, your post was still on my mind, I named it Annie LOL LOL Thanks

[4-eyes]

Poorman, I've tried almost everything. I do have generalized MuSK MG. Prednisone and now Rituxan are the only things that have helped.

[AnnieB3]

I choose to take that as a compliment. I'm sure some might see that as a dig!

My ancestors/parents grew up on farms. Cows were the family pets. They named all of them.

If you don't have copies of all of your past test results, do try to get them. You'd be amazed at what doctors don't tell patients. I've found veterinarians to be more transparent.

Annie