New Advice MGers- Weird Vision Symptoms
 

(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!

:hug:
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.

:hug:
Annie

Annie,

Thanks again for the advice. I have had many blood tests including for thyroid, vitamin levels (only D was low) and ANA and RA as well. My neuro has been extremely

thorough. As far as panic attacks ago I have dealt with them for the majority of my life and I would just move on. It is what it is but with the recent events with my

vision this has put my anxiety into overdrive. I have reached out for therapy (Psychiatrist can only prescribe meds which my neuro is willing to do) so I am proabably

going to do counseling for a bit during this process. I'm look at atleast a 2 week wait to see any of those kinds of doctors. My counseling for the time being are these

forums, my girlfriend, and I have been calling the MSFriends line. I have been managing my anxiety with Xanax (which I have had for years and took only as needed)

but I have to take it daily right now. To answer your question about PTSD, I ABSOLUTELY believe I have this because getting my MG diagnoses was traumatic. I was in

and out of the ER all the time in 2007 because my throat and toungue felt weird and I couldn't breathe. NO ONE believe me and they kep saying it was in my head and

the local health dept was useless. Once I finally got insurance, I went through many Neuros, Family doctors, and ENTs for my bulbar symptoms and most of them said it

was in my head. This also includes a Neuro at the Cleveland Clinic which was supposed to be one of the best places to go for help. After a year and a half after the

symptoms started it was my current Neuro now that took me serious because I was SURE that I had ALS or something affecting my bulbar muscles. He thought MS,

but checked me for everything, even LYME because I asked him to. The blood test confirmed I had MG and I wasn't crazy. Getting the diagnoses alone was medicine for

my symptoms. I had that relief that I wasn't nuts and there are a lot of doctors that were wrong and should have atleast did some testing before saying it was in my

head. I've never take a med a day in my life for MG. I've just lived with it for 5 years. So a lot of that old anxiety that I went through for about 2 years is back because I

am facing a possible MS diagnoses now. My doc thinks it may be the MG and wants to do this Lumbar puncture to rule it out because all of the other testing is normal

with the exception of some weakness in my right leg which he's not concerned about because all the visual pathways and eyes are healthy. I'm just not convinced that

my vision wavy distortion is in line with MG because it's not doubled or blurried. Either way, I am going through the motions. Optician, Neuro Opth, brain, and eye mr,

iand today the Retinal Specialist cannot find anything wrong with my eyes except for eyelid weakness, which has seemed worse lately. Even in the morning they're

extremely droopy, more so than in the past. I did start getting blurry vision a few months ago, but never had wavy vision. Maybe the MG has slapped me across the

head and it's time for meds? Doc wants to wait after the results of the lumbar puncture before we do anything. I am pushing through and it will be a couple of weeks

before I get counseling. I am hoping this is a fluke MG thing, but if not, I will learn to deal with it. Thanks again for responding, and you're right, my relationship has

been much better and has opened my eyes to what a beautiful person (inside and out :) ) I am with. Thanks for the supports, it's much needed from everyone, and I

am greatful for all of you. Talk to you soon

Just wanted to follow up that there hasn't been a change with my vision or health. I tried the Mestinon and that did help with fatigue but didn't touch the vision issue. I started Lexapro for a few weeks and it helped with the depression. Counseling is so so and I'm not sure if I like my neuro-psycologist. Anyways, I get my lumbar puncture results tomorrow. I started getting Tinnitus last week where it was loud enough to give me a tough time falling asleep. I told my doctor's and they said try tapering down the Lexapro and I may try something different. Sucks, because I was doing well until that started. My ears have been pretty sensitive to noise as well, and I don't know if some of you know this or not, but apparently MG can effect hearing and cause hyperacusis because of weakened ear muscles. I'm not going to say that's what's happening to me right now, but who would have thought?

I have had constant tinnitus that started with my MG symptoms and has never gone away. I am very sensitive to noises. Noises seem very loud to me and startle me, but they do not seem to bother anyone around me.


kathie

I am not too sure counseling has ever helped me all that much. I did better with a basic counselor than with the neuro-psychologist. I went to one for an evaluation, and my evaluation of her was that she was much crazier than me.

I'm sure you've come up with this test online for wavy vision and that your doctors have tested for this, but on the off-chance that you haven't:

http://www.allaboutvision.com/condit...msler-grid.htm

Yes i brought this up to them and they said no chance. I had scans and imaging with all the tests. Doc went over lumber puncture results and said i do not have ms or any evidence of csf issues . Started steroids thought for the first time and i will follow up in 2 weeks because he thinks its the mg relapsing. Im rolling with it.

Lol. Im not too crazy about him either.

May i ask, do tube televisions bother you or certain electronics? People talking loud or too many people talking bother me too.

I think I understand your vision problem, I describe it as lookimg through heat rising off of a hot car, wavy kind of like a fun house mirror. I have double, blurry vision but sometimes I have "wavy" vision too. Last time it went away when I had IVIG.

Funny you should ask, my last tube TV is currently sitting at the curb for the trash man to pick up. We have replaced both TVs in our home with the 55' plasma TV. My vision was so bad in the evening, I could not see the old TV. It is much easier on the large flat screen, and with the amount of time I am stuck in the recliner just resting, I thought the cost was justified.

Yes other electronics bother me too like the buzzers on the dryer, etc. There are certain pitches that are more bothersome (seem louder) than others.

kathie

Strizzlow, :) I'd like to check my understanding. Are you saying that they "wouldn't" do or send you for an eye exam?

I had three eye exams. I saw an optician who said the eye was healthy. I saw a neuro-opthamologist who did a field vision test, dialation with exam, and an OCT scan of the eye. I told him that some of the lines appear to bow in and out when I look at the grid and he said it cannot be from the eyes. It's subtle bowing, but still "wavy." He only observed eyelid weakness and said I was lucky I didn't have constant blurred vision. He referred me to a retinal Specialist because the foveal (responsible for center field of vision) was pretty thick at around 300 when it's typically below that. The retina Specialist did a dye test and checked everything and said it was healthy. They both did agree my symptoms were odd so they weren't sure. My neuro doesn't think these symptoms are too unusual for MG but still did a thorough workup. I am having the MRIS redone on a GE 3T Excite HDXT because the first MRI machine was only a .3 Open Air MRI which isn't every good at detecting lesions. They were ok with me doing this , but the doctor is confident this is not MS. They see nothing wrong with the "better be safe than sorry" attitude and my insurance will cover the testing, so I am appreciative I have their support. I will continue with the steroids and Mestinon to see if anything changes.

I would say more of the funhouse mirror is the effect I am getting but it's wavy when I gaze. It's very weird, and new to me. I don't know if this was gradual change or sudden. I'm just trying to plug away.

I believe it was said with the best of intention. :) Most often, Doctors are saying they know from experience how bad it can get and that they are pleased it isn't happening to you.

I just feel there is a better way to communicate that thought.

I literally cringe when I hear people tell me that someone has said, "Well, it could be worse!" or..."Just be lucky you don't have..." or, "Oh that's nothing, I had..." It can and is construed as a very non-empathetic statement. It can be perceived as, "Hey, quit complaining!"...or..."Plenty of people who have it worse than you do!" It will shut communication down, and how painful is that?!

Your pain, physical or mental, your concerns, and your feelings are as important as anyone else's no matter the degrees of illness!

I had constant double vision outside a small central focal point. I went to my optomologist and got prism in my glasses and I can see much better now. The eye doctor said the same annoying thing though that my vision was doing well - considering I had MG.


kathie

I'm just following up on this thread in case by some small chance someone else in the world has a similar issue that they can't explain. the 3T MRIs were all clean. My ENT checked my hearing and inner ear pressure, it's good. Their ENT Specialist from the University of Florida thinks everything is fine and thinks a CT scan of the inner ears to rule out Superior canal dehiscence would be a good idea but I am waiting on that. I have an appt. with Dr. Kennelly at the Mayo Clinic to evaluate my condition and repeat an EMG there in less than 4 weeks. She specializes in Myasthenia Gravis. This is all probably just MG causing bilateral weakness in both eyes and therefore closing one eye is not resolving the issue, atleast I hope so. I've limited the amount of submissions I post on here, and I will follow up with the results and what they're reccommending for treatment. Have a good day.

Well the follow up wasn't as good as I hoped. Saw Dr. Kennelly and their neuro-opthamologist. They don't think it's MG but don't know what the problem is. The eye doc said he didn't know where to go or who to see for the problem. I can't believe it.

I wanted to reply to this post because I recently began having wavy vision as well. Last week, I was in the Walmart parking lot resting before I went in. I had noticed earlier that my vision was a little off, but couldn't put my finger on the problem. As I was watching people crossing the parking lot, I noticed that, especially in my left eye, there was a sort of irradessence and waviness to the left side of my vision. I could see the people, but when I tried to see their faces, I could not focus and see what they looked like. The waviness was almost like looking into a fish tank with a very slight movement in the water and was only on the left side in a sort of arc or semicircle. I also lost my lower peripheral vision on that side. I panicked a little because I had just gotten over some problems with my eyes, and was told to call if I noticed any differences in vision.

I decided that maybe I had overdone it that day, so I took an extra dose of mestinon and headed home before it got any worse. By the time I got home, it had cleared up.
This morning I had the same problem only in my other eye, so I immediately took another dose of mestinon, sat down and relaxed and closed my eyes and within 15-20 minutes it was completely gone.
I thought about this post when I experienced this.

Thanks Limpy. Sounds like an ocular migraine to me :) . I hope you're feeling better. This movement issue I have been having is 24/7 since April. I have some balance and inner testing to do in Miami to check for vestibular loss that may be causing the problem.

I had most of the same issues when I first was diagnosed. My Opthomologist was the first one to recognized it. Most went away though when I first started on meds. Now it only comes back slightly when I am tired or extremely hot. And yes stress does seem to exhasperste the symptoms. It will get better.....

MG symptoms
 

Dear Strizzlow20,
The strange occular symptoms you are getting could easily be from MG. I have similar focusing problems, blurriness and even double vision. It all depends on how tired I am and how late in the day it is. I find resting with my eyes closed for at least 30 minutes when it gets bad helps. Also the more stressed I am the worse it is. Some people claim ice packs help, I haven't tried that. What does your Neuro tell you about occular MG symptoms? Let me know.

Wavy Vision
 

Quote:

Originally Posted by wvfox (Post 990060) I think I understand your vision problem, I describe it as lookimg through heat rising off of a hot car, wavy kind of like a fun house mirror. I have double, blurry vision but sometimes I have "wavy" vision too. Last time it went away when I had IVIG.

I have the same vision problems. It is as you describe. Heat rising from a hot cat and it is wavy. My wonderful neuro decided it was migraine auras even though I wasn't having a migraine at the :confused:time.

Is it constant for you?

No it was not constant. It is mosty blurry and double vision when I am starting to go down hill now snce I started on Mestinon and CellCept.

Okay, well I hope you get some relief soon. What I am experiencing is constant.

I'm updating my old posts with the updated link of what I am somewhat seeing:

http://www.migraine-aura.com/content.../index_en.html

Just updating this thread with my current situation in case in helps someone else out in the future. I had a lot of balance testing done at the University of Miami a couple of days ago and a few things came back abnormal. The VENG and rotary chair test showed abnormalities. I basically barely had any response to the caloric testing they did which surprised the doctor. I don't know what this means yet as I have to wait on the doctor to follow up. She said she also noticed an eye convergence issue which if THAT is from MG would mean my symptoms are progressing. Not sure how to differentiate whether some of this is MG or not related at all. Anyways, I hope all is well with everyone.

As long as you haven't gotten effective treatment yet, you might note that the following condition is associated with oscillopsia.

http://edoc.ub.uni-muenchen.de/14000...gel_Rainer.pdf

(English starts on p. 12)

Meds to treat it, apparently no matter what the etiology:

http://www.efns.org/fileadmin/user_u...scillopsia.pdf

(See p. 3)

If you're interested in the MS and MG meds:

http://www.ncbi.nlm.nih.gov/pubmed/21734596

It's all a little vague as far as what it may all "mean" but maybe some of this could help figure out a med which would work.

Thank you for taking the time to post this information. I will go through it and take a look at each thing. Redoing the MRIs tomorrow and a week for a different area. I can't figure out anything that runs in my family so I imagine it's idiopathic or an autoimmune condition. The cerebral degeneration conditions worry me and it's something that's been on my mind since this started. It's just a waiting game right now.

It sounds like ocular Myasthenia, no?