(The title was supposed to be Need Advise, not New Advice, sorry )

Hello Everyone,

I was DX with MG in 2008. It mainly effects my bulbar muscles and my symptoms are mild. I have recently been told that my eye lids are weak and I have felt a general weakness and fatigue in my body. I also started having vision problems two weeks ago. It's not quite double, however I do notie if I look in a direction to the side (almost strain) it takes a while for my eyes to center focus. In my center field of vision I am noticing mild distortion and waviness. Things look wavy not blurred. I have seen an Optician, Neuro-Opthamologist, ENT who did a VENG which checks balance and looks for Nystagmus and Saccades, and my Neuro. When I told my doctor about this he was concerned because my eyes are being told they are healthy with the exception to some notice weakness at certain angles and my eyelids. This distortion/waviness which I can only describe as words seem to gently wavy in all direction when I am looking at them. It's not as bad if I close one eye, but it's still there. I am FREAKED OUT. So my doctor wanted to run tests to check for a bunch of things such as stroke, MS, and vasiospasms. I just feel like my eye sight has gotten worse and gets worse the more panicked I get.

In the past 2 1/2 weeks I saw all of these doctors and had a Brain MRI with and without contract, mri with and without contrast of the eyes, MRA, and C Spine MRI. I also had a CT scan before those because I went to the hospital. I can't put a name to it but the closest thing I can say is that its like a very mild form of Oscillopsia except for I am not impacted diferent when I am walking or sitting or laying. I don't know the name except for "distortion." I also had an EEG which tested the nerve transmission and brain for my eyes to brain, ears to brain, and limbs to brain, all came back normal with a small exception in the right leg which my Neuro said was minor and I have never had a problem there except for breaking a toe.

I have 0 optic neuritis and my Neuro said everything came back normal. I am seeing a Retinal Specialist Monday just to double check. I do not have any lesions on the brain which can be evidence for MS. All other testing such as visual field testing and the visual evoked potentials were normal. He seems to think this is my MG and he said he has heard of this before with people in MG because the muscles are continuing to weaken or move and cause a wavy effect (but I'm not so sure). I have yet to find anyone with this symptom on the internet. This is not blurring as much as it is distortion. I was almost in tears becaues I was sure this was MS and he said he doesn't think it is and that we can rerun the tests in 6 months becaue it can take a while for MS to show up. He also said we could do a lumbar puncture and if that came back negative for MS that he is 99.9% positive this isn't MS and just my MG acting up.

This is why I am reaching out. I am just wondering if anyone has had similar issues. It does get worse as the day progresses and gets worse when I am stressed. Xanax does reduce the symptoms (probably because stress is reduced) but I still have this symptom in the mornings now, just not as intense. I do have the General form of Myasthenia but just started noticing problems with my eyes the past couple of weeks. I noticed back in January I was having problem with my eyes focusing quickly and that prompted for my first eye exam in like 8 years. At that time, I did not have this symptom but advised I should get glasses and they said I have an astigmatism.

I'm scared and just looking for advice. I am getting the lumbar puncture next Friday, but so far, the only thing that has come back Positive is MG which we know I have issues with. I just don't think these symptoms are typical because I can't find it online. The stress is making everything worse. I have never taken any meds for my MG because everything has been mild. I'm tempted to start on some meds soon or ask for the Tensilon test to see if the eye symptom stops. I don't know. What do you guys think?

I have something similar. My right eye is so weak that the lid visibly vibrates on and off all day. When it does this my whole field of vision vibrates up and down.


kathie

It sounds frightening to have the eye symptoms and not know what is causing it. It sounds like your physician(s) have done a thorough workup.

I had eye symptoms similar to what you described when my symptoms first started. I did describe it to the eye doctor as feeling like my vision was distorted. It usually was only in certain directions of gaze and did get worse towards the end of the day. As it turns out, when I went to see the neuroophthalmologist he was able to determine that it was actually minor double vision that I was experiencing.

I hope you get some answers soon.

Cate

What you are describing is nothing too unusual for MG. I also still have a bit of visual symptoms when I cover one eye. The muscles are just so weak, and there isn't a "balanced weakness" so stuff like that can occur.

Klonopin is definitely not a wise treatment for the vision symptoms. If you've been using it regularly for more than a couple of weeks, you could become dependent, something you don't want, I'm sure.

Your doctor has been thorough, yet you still seem extremely anxious. I hope you can reconcile the issue soon.

Thanks. I agree about the xanax use im just tring to handle this vision issue. With my.distortion its not the entire field of vision just mainly center and the saying is.driving me nuts. Its hard to read and I'm in front of a computer all day for work so i know that doesn't help. Its just weird and thank you for sharing your symptoms

I work on the computer all day too. I got a bigger monitor to reduce eye strain. I bring extra ice packs in my lunch and take turns putting them on my eyes during lunch. It really helps the vision.


kathie

It sounds like your doctors have been very thorough. Has anyone though about circulatory issues like Antiphospholipid Antibody or endocrine issues like diabetes? I believe I mentioned those before.

Has your internist looked at this from a different angle? What if it's not something you can "see" on imaging but something like a vitamin deficiency?

Can you think of anything other than the onset of muscle weakness that could have happened before it all started?

Sometimes while doctoring, you might never find an answer. However, assuming it's MG without doing - like you said - a Tensilon test (which can cause greater side effects) or using Mestinon can be dangerous too.

I'm almost getting the sense that you're afraid of going blind. Do you have a "hidden" fear like that making anxiety worse? If so, it helps to talk about that with someone. And, yeah, sometimes it does help to talk to a psychiatrist. No, I am NOT saying your symptoms are in your head! Though your doctors seem to have ruled out your structural head as the issue.

There are so many things a good therapist can do for you. There are "tricks" to help get you out of the panic phase and into a calm phase. Meditation is one. The feelings of anger and panic can't exist at the same time, so feeling more empowered is good.

I do think you should feel reassured that you've had such a thorough work-up.

I do have to disagree about the focus issue. With MG, you have binocular double or blurry vision and when you close one eye, that goes away. It's a physics issue. If you have one source of focus, weak muscles don't matter. Your eyelid can close more and the field of vision could be less. But unless you have other eye issues like astigmatism, you should have clear vision when you close that one eye. Do you need reading glasses?

Some people are more sensitive to light. What color are your eyes?

I hope you can have a good conversation with people on Monday so that you are more reassured. In the meantime, only you know what is truly causing so much anxiety. Is it the sight issue itself or an underlying fear?

Whatever is going on or not going on, I'm sure your doctors will help you! They've ruled out some pretty big causes.

One other little odd bit of info is that recent research has shown that a reduced amount of acetylcholine can be a contributing factor for migraines, as can channelopathies. So maybe having some consistent dosing of Mestinon would help. It would definitely help your MG!!

Hang in there!


Annie

Annie,

I think you're absolutely correct about a lot of things here. I do have a big fear here. I have been checked for systematic illnesses and vitamin deficiencies and MS seems/seemed more likely with the vision issue I am experiencing but my doctor thinks MG may be playing a part as well. He told me and my girlfriend that MG and MS can happen together and it may take some time to see lesions on the brain if this is what I am having. Trust me when I say my vision is distroted and not like blurred or double vision. My fear is that I do have MS, and if I do, then I would like to try some treatment. My memory is not good and I have also noticed that I feel like my coordination has been off but not enough to the eye of a neurologist. It could be stress related, but I noticed these things prior to the vision issues. I guess my big fear is that if I have the progressive form of some illness such as MS, my vision is going to continue to get worse. My mental state is awful as well and I am worried that this has been impacted by this illness. I am stressed/depressed/scared all at the same time. I've been down this road before with the MG diagnoses. I was told they were in my head and no one bothered to check anything. It's like I am reliving the experience all over. I am going to reach out for counseling because it's hard doing this on my own and I KNOW that the mental battle is just as important. Regardless of what is happening, if I can't ignore these symptoms and just be happy, then I am going to feed ANY illness. I have a heavy metal test that I am starting Monday. You guys are right about a lot of things here and I appreciate you responding to me. I'm just frightened which I think most people would be in my case. I'm not happy about a waiting game.

As far as a trigger, the night before this happened I had a really bad episode (like a panic attack) and I couldn't sleep. The next morning I felt dizzy and I was off. My balance wasn't good and I noticed the distorted vision issue during a meeting at work while looking at a carpeted pattern. I thought it was just stress so I didn't say anything to anyone. Friday came and I still noticed my vision issue and I couldn't look at patterns without them shimmering and lookign wavy, so I said something to my girlfriend. Then that is when I went through the process of seeing an Optician, Neuro-Opthamologist, ENT, and Neuro. My neuro is awesome I'm just struggling to keep my composure and there is a part of me that is starting to wonder if I really am going crazy. I'm just tired but I have to dig deep for happy thoughts. My GIRLFRIEND is amazing and was with me through the MG issues. We will be together 6 years in June. Another fear I have is that I am going to deteriorate and not be the same person mentally and physically. I don't want her to see me like that either.

Hello Strizzlow I see you haven't been back in a while. I am very interested in what transpired at your visit with the Retinal Specialist. Given all your tests, they are taking you very seriously. I'm going to agree with you; I believe that it's possible that some of your ocular symptoms are not MG-related. I like your post, Strizzlow--very open and honest. We can all appreciate that you are frightened. I'd be worried about you if you weren't.

Hope we'll hear from you...

Strizzlow20, Panic attacks are no fun and are shouldn't be handled alone! I really do hope you get an expert psychologist or psychiatrist to help you out. They're really invaluable!

It is scary to think about the "what ifs" in life but that same thinking can also make you less fearful. They can make you realize that you ARE strong and resilient, as humans are. And it sounds like you have a good relationship with your girlfriend. People who truly love you don't only stick around when everything is perfect. It's the times that are more challenging that can bring people even closer together.

Have you been to an endocrinologist? Some anxiety states can actually be caused by endocrine problems, like Graves Disease. It might be worth an evaluation.

Have I already asked this . . . have you had your B12 checked?

Are you on any drugs other than the MG ones? I ask because when you get new symptoms (i.e., vision), you should always make sure a drug is not the cause.

You have to know that many illnesses are manageable. They aren't always "fun" but you can live a good life!!!

Perception is very powerful. If you can change your perception about the fear or a disease or whatever, you are then in "charge" of how things will go and how you will feel about them. That's a very important point when dealing with panic attacks or fear or anything in life.

And I think it might be a good idea to be evaluated to see if you have PTSD. Have you had any traumas in life that could have made you more fearful of any future situations? I have PTSD from several traumas (and associated panic attacks). My panic attacks have been reduced to almost nothing, thanks to the help of a great psychologist. There is a new therapy now basically called "touch therapy" that is helping our veterans.

I'm just tossing ideas out there. I hope you'll get someone qualified to talk to about what's going on with you. You deserve to be calm, reassured and happy. Hang in there and know that you'll be okay.


Annie