I Want to Give Up
 

I am over this crap. No answerz and no similarities to my vision problems as everyone else. Steroids don't work mention doesn't touch it. I seriously feel like giving up. Im not looking for a pitty party, i just want my vision back. Im hopeless.

Have you seen a neuro-opto? When I got double vision I went to a neuro-opto and he put me on a high dose of Prednisone (80mg) and my double vision went away and hasn't returned.
Mike

my problem is tbi effects, but I can relate to the hopeless part. not sure what to say except that I wish you weret going through this and I hope others with your issue respond here. there are people out there who care, especially at this site.

Yes. No double vision unless i get very tired. Each eye is the same. He said my eyelids were a little weak. If i.close an eye it doesn't help. He said my wavy vision is probably psycho somatic. That's what everyone said about my throat and speech issues toountil mg tested positive.

Sorry you are discoraged. I, too, have the double vision. Prisms on my glasses help a lot--cured it till this week.
Sometimes when I am tired, it comes back even when wearing the prisms. I got some that just afix to the inside of the lenses, not ground in. So, if I'm in a "good patch" I can peel them off till I need them again. They cost $45 per pair of glasses.

Neuro-opthalmologist told me they generally only work for a period of time, though.:rolleyes:

Susan

Don't give up!.. My eye symptoms are the most unpredictable and respond the least to medications. My neuro-optomologist seem to think that was more-or-less the norm for MG. I did try prisms and since my eye problems are so consistent, prism helped a lot. In fact, when they put the prism glasses on me, I nearly jumped out of my chair from how well my vision came into focus. I would definitely see a neuro-optomlogist and try prisms. Do eye packs on your eyes relieve any of the symptoms. That helps me on really bad days.

kathie

@Strizzlow20, The psychosomatic comment from your doc seems a little lazy to me. The way your eye muscles point is going to affect how you perceive things. I have double vision on a bad day and I've also had the shapes of things look wrong. Double vision happens when the muscles can't steer both eyes to look in the same exact direction. If your left and right eye are consistently steered in the same different way, you will have double vision (and that's why prisms can help).

When your body tries to control your eyes and can't, the muscle movements can become jerky rather than smooth movements. When the right and left don't move in the same way consistently, I think it can cause things to look distorted in shape or wavy.

I don't know what your symptoms are exactly but it doesn't seem hard to imagine that poor muscle control could change what we see in many different aspects. If not, we must both be psychosomatic.

Spoke to the neuro today. He is sending to the Mayo Clinic. I will be making arrangements to see them see after I fork out 500 for a past bill that I owe. I am also going to Shands Medical Center at the University of Florida next Friday for them to look into balance and vision issues. These are my last steps. 2nd sets of MRI came back fine with no lesions or tumors. Doctor still thinks the eye issues are from MG but some of the sensory issues such as tingling aren't consistent with MG. I have no idea of what kinds of test I will go through, I just hope they're thorough. He is also going to have them look into LYME since my other eye issues started when I was 17 in New England. I have floaters, palinopsia, and some phenomenon where you see bright sparks darting in your vision when you look at something like the sky. There's a name for it I just can't remember. Anyways, I don't know. I think after this there's not much to do but to try to plug away. Doctor was ok with me with tapering off of Prednisone since it may skew some of the tests they will do. It's really hard and depressing sometimes. :(

BTW, to get an idea of what I am seeing, I showed the illusion below to my doc on the laptop and came in with 2 pages worth of notes including timelines and symptoms. I heard this was smart to do, so I tried it and asked them to include it in my file.
http://static7.bytecolumn.com/wp-con...012/10/op2.gif

I see things move like your photo when my eyes are 'tired'. Sometimes it's worse than the example you show above. I looked around the web to see what causes this effect and read the following:

"There's no solid explanation for illusory motion. Some visual scientists think it has to do with fixation jitter: involuntary eye movements that give the illusion that objects near what you're fixated on are moving. Others think that when you glance around the image, motion detectors in your visual cortex get "confused" by dynamical changes in neurons, and think you're seeing movements."

If the motion is caused by jitter (which I always thought it was), symptoms that affect eye motion would cause things to move around like your picture above. I especially think this could be true if your two eyes moved differently from one another.

Here's another picture with a different motion pattern:
http://i.livescience.com/images/i/00...tsnake2-02.jpg

I don't know why this motion happens, but I get it also. Rest and mestinon help me see best and I guess I'm lucky for that.

I hope you feel better. It's good you got some (hopefully) good referrals.

Good luck with Shands at the University of Florida. I did not have very good luck there, though did receive my diagnosis there; but, then they spent the next several months trying to disprove that I didn't have it, even though Mestinon was a huge difference, as were the treatments of IVIG. My insurance company was pushing me to move away from there, and steered me to a Neurologist in St. Pete who has 'special interest' in MG.

Hiya,
I just wanted to chime in - even though I'm undiagnosed. Tomorrow is my neuro opthalmologist appointment.

I couldn't even look at the pics you put on here as my eyes couldn't cope with it. My vision is awful at the moment double vision, blurring, ghost images, wavy stuff, my peripheral vision jumps up and down. So I get what you are saying completely.

Have you had your b12 levels checked? When my levels are low I get numb or tingly hands and feet. To top my levels up I use solgar liquid b12 drops. You put it under your tongue twice a day. My symptoms of numb or tingly hands and feet disappeared within a week. Its worth giving it try but get drops or sublingual tablets as sometimes your stomach is what's causing the b12 in your diet not to be absorbed.

A good website is called b12d.org sorry I couldn't insert the link my nexus wasn't playing ball. This lists the symptoms of b12 defiency and its much more common than you think.

Don't give up,

Rach

I've had everything checked you could probably think of. Just MG and low vitamin D so far. I have to wait to see a neuro muscular specialist at Mayo which could take 2months.

Hiya,

Have you got the actual report for your b12 level's? If you go to the website it will show you that what the UK see's as an acceptable level of b12 actually is a lot less than what the body needs.

I don't know what the level is in the USA is but it will probably be around the same as the UK. Here the b12 charity is trying to get it raised as people are suffering from peripheral neoropathy and its being left so long it can't be reversed.

Good luck with the Mayo clinic

Rach

I will post the B12 levels when I can locate them. I have a huge folder of all of my medical records. Mayo called me today and instead of waiting until October they're getting me in on 8/20 now which is really nice. They are going to repeat the single fiber EMG and look into some other things that may contribute to my problems. Last time, I didn't have an abnormal test but I really believe this is going to come back positive because my entire body is weak at times and my muscles strain/tremble if I over do it. This goes away with rest. I've upped my Mestinon does and I have seen improvement with my energy level, but it doesn't touch the vision and all of the weakness. I guess at 27, if this is the MG kicking my butt and making my eyes off constantly, I'm worried about progression/recovery. I'll have to see what they say.

about Mayo clinic
 

I received my dx from mayo clinic. Great facility. You will go through a lot of tests, but they are wonderful to you while you are there. I wish you all the best. ginnie

Do you know which doctor you saw by chance? I saw one in 2008 and he wasn't sure if I had MG because the single fiber MG was negative. I have 0 eye issues at the time, only bulbar. I came back home and told my Neurologist and he said he had seen cases (he worked with Dr. Eaton, co-finder of LEMS) where they weren't always positive. We redid the blood work again and it continues to be high.

mayo clinic
 

Was dx,d with auto immune problrms
In 1984 ot
Doing this on my nook sorry for errors first time

Hi,
I was also seen at Mayo several years ago and they diagnosed me with MG. I saw a neuro-ophthalmologist for my first appt. and then saw the neurologist later in the day. That was helpful b/c she was aware of the positive tensilon test from their neuro-op and took that into consideration when some of my other tests were not definitive. I hope that you'll be seen by a neuro-op also since you are having vision issues.
Cate

They didn't say it was a Neuro-Opthamologist I was seeing but I did see one several weeks back. He noted mild eyelid weakness but when I told him of my wavy vision he looked at me like I had two heads and said it was probably stress. Stress is right, because of the vision issues. Thanks for your answers.

Are you in Florida? I live in Orlando and see a dr in St Pete that is well versed in MG. ALAN Weiss
Cellcept has helped my double vision.... So sorry for your frustration

Hi strizzlow
 

Hi, and I am glad you are going to Mayo clinic. I was DX'd not with MG but with auto immune problems. They set up a trial for me to go to, at Columbia Missouri medical facility. Mayo was very very good to me, and got to the bottom of my problems when all other doctors were stumped. Testing lasted days. I saw a doctor who was actually named Dr. Mayo! This was back in 1989. I sure wish you all the best, and that they finally DX you. ginnie:hug:

So I found some information below. If what I am having are too subtle to detect on an exam, I guess it's not impossible for me to have the vision issues that I am having. I read about pseudo internuclear ophthalmoplegia myasthenia gravis which can mimic true INO.

What is Internuclear Ophthalmolplegia?

Internuclear ophthalmoplegia (INO) is the classic visual problem of the eye movement system in MS and is seen in 22 percent of individuals with the disease. INO can involve abnormal movements of one or both eyes. INO is the result of an inflammatory demyelinating lesion in the pathway joining the eye muscles that allows us to move both eyes simultaneously when looking to the side. This pathway is called the medial longitudinal fasciculus (MLF), and is located in the brainstem. With an MS lesion affecting the MLF on the right side of the brainstem, the right eye can not look towards the nose (to the left), but the left eye can move out towards the left. The right eye will, in a sense, try to ‘call the other eye back’ towards the right side if gaze to the left is maintained. This will result in involuntary, rapid, rhythmic horizontal movement of the left eyeball (nystagmus). It is this combination of failure of one eye to look towards the nose, and nystagmus of the other eye that identifies INO. INO results in double vision (diplopia), since the eyes are not able to focus on the same target. When looking to the one side, if either eye is covered, the double vision will go away. Another abnormality that may be seen is double vision on upward gaze, since the eye on the side of the affected MLF will often be able to look “higher” than the other eye. Some INOs can be quite subtle, and difficult to identify, while others are obvious. In addition to double vision, individuals can experience visual confusion, transient visual sensations of objects swaying back and forth (oscillopsia), reading fatigue, and loss of depth perception (stereopsis). Intravenous steroid therapy can be administered for acute INO.