(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

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

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