[Chromatic]

Heya,

I've been having problems for over 3 years that no one has figured out yet.. and only recently have I even discovered MG, and it sort of fits some of the symptoms.

As for eyes -- Around 5 years or so ago,.. when I was very tired one night on the computer my left eye suddenly fell off to the left side. (Exophoria) .. it basically just stopped responding, and obviously created double vision as the fusion from it and my right eye which was in alignment were not close enough to be fused.

This was sudden and had never happened before.. I was 25 or so.

I went to the bathroom and looked and the left eye was all the way to the left side and unresponsive. So I covered the right eye and sure enough the left eye came right into position as it should have. I uncovered the right eye and it fell back.

It remained this way for the rest of the night.. sort of scared me but I thought nothing of it. I went to sleep and when I awoke the eyes were fine, to my relief of course.

This did happen again, but not for another year or so.. and corrected itself after sleep. It happened again about 2-3 more times, but close to the second time (ie: when I was 27..) -- I am now 31, and it has not happened since. The left eye does tend to get 'weaker' when I am tired and I think overall perhaps.. but it doesn't fall off like it did those few times,.. instead it just feels like it wants to drift off, like my eyes in general want to defocus and relax. Like my vision is a constant 'effort'.

Anyhow -- now one of my most bothersome symptoms are my eyes, or more specifically my vision. 24 hours a day, 7 days a week, 365 days a year my vision 'shakes'. Not my eyes (or not that any doctor or myself can see).. so it isn't nystagmus. But the vision vibrates, shimmers, like you could picture a hand held camcorder doing. So reading is very difficult, patterns tend to 'shimmer' .. and in general my world is very distracting and uncomfortable because of the way I see all the time. Things seem too bright, I have halo's and starbursts,.. and so on -- but according to two optometrists and one ophthalmologist my eyes are fine. Hah!

Besides the eyes though -- as time has progressed I am feeling extremely weak all over my body. Like muscles I didn't think could even get weak..

My eyes have felt weak for years,.. but in the past year my neck feels too weak to hold my head up,.. my torso is starting to feel weak -- my back has been feeling weak (I attributed it to posture or inactivity) .. but now my stomach/abdominals are feeling weak .. too weak to hold my body up when I'm sitting.. I can 'do it',.. but they almost quiver when I do it for long and definitely feel uncomfortable so I invariably slump which I know isn't helping.

It almost feels like my breathing is labored sometimes from this area of muscles, but not like I picture asthma or being out of breath. But then again the breathing could just be me over reacting to the weakness I feel.. who knows.

My arms, shoulders, back, neck, -- pretty much every single muscle group I can think of feels weak! If it was a specific area I could explain it away.. but the whole body makes me wonder and is why I'm here asking.

Even my hands now,.. when I type they are feeling weak and tired.. like I have zero muscle stamina.. it is very uncomfortable.

Another example as I think back is a few months back when I was painting a fence helping my father at his horse ranch -- I kept wondering why my hands would cramp up and ache.. get weak so quick, when I was just going back and forth or up and down staining the fence. It was weird .. but now it might make sense.

Can/does MG cause your hands to 'tense up'.. 'cramp up' etc.. feel so weak with such a repetitive activity and very quickly? I'm talking after a minute or two.. sometimes less. I would constantly switch to my right hand, then my left, and over and over as each hand would give out or get really tight and uncomfortable.

As for my legs.. this just feels like my walking is more of an effort, balance is worse, and so on.

I can't explain every muscle group as I haven't had the time to analyze everything as I just learned of MG days ago.

You know what the eye doctors have done..

I have gone to a GP maybe 8-10 times for feeling tired, weak, my eye problems (I tell him I see double, and some other problems but I don't go into major detail as he isn't an eye doctor), my pain (I have neck and back and even sometimes pain in my hips) that I have no idea what is causing it, and my general mood is anxious and I suppose depressed. So far he has tried me on Zoloft .. which I took for 2 months and it did absolutely nothing.. to which he was surprised. I was not so much

He has ordered maybe 8-10 tests on blood work.. tested for ANA, Rheumatoid factor, thyroid general function, Vitamin D, and a few things I forget.

After a few thousand dollars, an MRI recently, and 8-10 visits my only positive result was deficient Vitamin D -- (I was 14 , when optimum levels are 50-60 or better.. the minimum level is 32 and as we know with Vitamin D tests are very conservative on their ranges.. ie: 32 is probably low..)

So he told me to go buy a vitamin D supplement.. which I did but I haven't taken it consistently because for some odd reason (just my luck here) vitamin D messes up my bowels. It is very uncomfortable to take it.. and it takes more than a day for it to take effect, and a few days for the effect to stop if I stop taking it. But recently I've been taking it and just suffering with the stomach/bowel issues. (From all I read Vit. D shouldn't cause any problems whatsoever and I am far from having more D than I need.) I've tried 4 different brands too =/

Point is I'm sort of at a loss.. sort of hopeless on ever finding an answer, and jaded towards getting help because of the results and how if you don't have a result after X visits you are just assumed nuts.. must be in your head. It is like doctors are just egotistical , assuming if they haven't found an answer within X amount of time it must be psychological, which is quite dangerous to assume imo, especially with a 100% cooperative patient.

The second symptom that bothers me the most and partially why I had the MRI without contrast,.. is brain 'fog'.. or just being unable to think clearly,.. forgetting why I walked into a room -- just feeling out of it, like something else is using all of my brain power , all the time. This really bothers me,.. not being able to see properly, and feeling just utterly disoriented and thinking distracted all the time makes you feel really terrible. I have always been intelligent and very level headed , shrugged off most physical problems, and been a step above in school, college, my peers, and so on. Now I feel like I'm a shell of who I used to be a few years ago.

So back to MG --

With the tests run, and doctors seen -- I'm constantly trying to research and discover what might be the cause or (causes) of why I feel so bad physically. The physical creating alot if not all the mental anxiety and depression.. not the other way around. So I recently had two ideas that fit more than most things and have not been 'tested for'..

The MG, and some kind of vestibular problem.

With the weakness being so prevalent now and the eye symptoms with MG.. I'm here to ask what you guys think. I know this isn't a vestibular forum so not here to consider or ask that.. I will go elsewhere for that discussion..

But as I'm sure many of you are aware -- When you research Myasthenia Gravis on the internet, as with most disease, it comes back with a good overview but somewhat non specific on symptoms, among other things. Further what specifics it does give is repeated nearly verbatim on the other 3 million websites across the internet.

The only way to get more specific and likely information is from the source,.. you guys.

So ask questions if you want, or tell me if any of this sounds sort of like MG,.. or what not -- I need some help here and appreciate your time if you can offer it.

On the symptoms -- I feel bad from the second I wake up till I go to bed.. I don't ever feel 'good' when I wake up and then an hour later feel incredibly weak. Though I do get weaker as I get tired but it doesn't really effect my 'mood' if that makes sense.

As for fatigability -- I have a hard time with this.. One thing I can tell is my face.

If I go into the bathroom and do something like try to lift my eyebrows as high as I can.. (like making your forehead wrinkle) and hold it. Within a few seconds it starts to fall back down.. and I can't hold it very long at all. I know this isn't right. When I smile it feels incredibly weak and I have noticed before that my smile "cheeks" tend to quiver or spasm when I smile "big". When I talk my voice feels and sounds weak. IE: My voice is hoarse ALL THE TIME.. I don't get it.. but moreover after just a few words the speech feels like an effort. I practiced it recently and if I read aloud to myself.. I can't go more than a minute or so before I literally can almost not read anymore from it being too much. I can generally FORCE myself to continue but it starts sounding pathetic and I can feel it in my throat (must be muscles or something in the area) being weak. Back to my face I think the muscles to move my mouth in the face/jaw and such make my speech more difficult.

It even seems like my speech is 'lazy' or very non enunciated (pronounced clearly) .. and I used to think it was because I just had bad habits .. but now it makes more sense that it is just weak muscles.. because my speech was fine 5 years ago,.. so I didn't suddenly develop bad habits at age 25-26 and beyond.

I try not to make my posts too long when talking about this kind of stuff,.. but I know invariably this is probably longer than any of you are used to reading and I have one hundred more things I could mention -- but I'll stop here.

I appreciate any of you who read this, in partial or entirety , and especially appreciate those who feel they have anything they would like to respond with.

You guys are great,.. I do read alot of the posts here.

Thanks, and take care,