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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - MG? (https://www.neurotalk.org/myasthenia-gravis/141450-mg.html)

Quote:

Originally Posted by pingpongman (Post 729138)

The one test that all my doctors seem to like to test the eyes is have someone stand in front of you and hold up a finger about 12 inches in front of your face at the TOP of your field of vision. You hold your head straight forward and focus on the finger by forcing your eyes up. When doing this after 30-60 seconds your eye should start drooping more as the muscles start getting tired.
Mike

Thanks, this is a very real and easy to understand example of a test. I have heard of various methods of this.. mostly just them asking you to look up for 60 seconds or so while they observe,but this is specific to give you a point of reference so you are looking at the 'straining' level to see the proper effect (if there is to be one).

I can look up now, at the top of my vision, and VERY quickly feel fatigued in the eyes.. nearly immediately.. but haven't officially examined it from someone else, video, doctor etc.

Any other tests you guys know of that can be done without specialized equipment?

I know this can be pretty much every muscle in the body theoretically.. but the tests I'm sure concentrate on easily fatiguing groups.. perhaps small muscle groups etc.

I heard something about walking on heels? (This would work the shins.. but may be mixing it up with another test).

I have heard of something to do with laying down and looking at your toes/feet for 60 seconds.

With me, just about anything involving muscles (over sustained time) causes me fatigue.

I often feel like my whole body is tremoring.. or shaking internally. Not so much an anxiety feeling, but more one of extreme weakness.. and it is uncomfortable. Example, I was helping someone on their laptop earlier and I was operating the touch pad and buttons from beside them for a few minutes. Just holding my hand in a semi-flexed position as that requires made me take note and I had to stop and rest my hand after a few minutes. I mean just pathetic things like that that never before would you even THINK about much less have it cause fatigue.

As I said it feels difficult to hold my head up, and now even my torso when sitting down. My legs feel weak all the time,.. I can still walk of course, but they feel like literal toothpicks.. I can be walking and one leg 'give out' sort of with regularity. I don't fall, but it is like I go to step on one leg while walking and the muscles just sort of cease to function and it causes me to catch myself.

But, really, anything of sustained effort causes these feelings. Even my hands as I type this.. they feel tense, overworked, and it would feel much better if I just brought my hands down to my side and let the muscles in my arm (that feel strained) rest, and my hands rest.

Problem is I can bring them back up after I rest, and mere seconds later they feel the same way.

As I mentioned before,.. (I think) -- I have put my weakness over the years up to just being sedentary,.. and needing to workout/work my muscles more.. ie: My legs,.. my back,.. etc. However, as time goes on muscles that should never 'need' working out like my eyes, hands, forearms, torso, and so on that should function relatively well with the typing, and eating, and general motions they get daily forever without great fatigue -- these muscles are fatiguing beyond the point of ignoring it,.. and can't be explained away by needing to 'work out'.

Does that make sense at all?

If I have MG, it is of the type that effects more than just the Ocular --

Though, the first sign , will definitely be having an eye go lazy at the age of 25, randomly, when fatigued late at night at the computer. Literally, my left eye went lazy and floated off the the side, causing double vision immediately. I have perfect vision and never had an eye problem before .. so something like a lazy eye at the age of 25 is just unheard of. Then it correcting itself after sleeping,.. only to happen again maybe 5-10 more times over the next several years, to now.. just not happening anymore. I think I am more perceptive of my eyes now and discontinue strain before I otherwise would have because they are much weaker and more easily bothered if you will.

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As for Sue and her Physical therapy --

I've thought this makes alot of sense for a long time now. Even with MG.

Especially with MG.

People with MG, of the type that effects more than the eyes of course.. are likely to not use their muscles nearly as much because they fatigue and they support themselves with things,.. they are much more sedentary -- and they very acts needed to sustain the normal muscle strength just aren't able to be performed.. not resistance training, but just long term (normal for most people) use of muscles. Like the holding the torso upright in good posture unsupported, holding the hands and arms out in front of you for long periods of time,.. and other longterm stamina activity that people do everyday just as a means of function -- these things keep their muscle mass at a specific level that allows this to continue.

So with MG the sedentary lifestyle, inability to sustain muscle contracture for long periods, and so on allows for inevitable muscle atrophy. Lowered strength, but also lowered stamina.

This just exacerbates the condition.. weaker muscles = harder to function with a disease that causes weak muscles.. double effect.

So training them in a careful manner can offset some of the lifestyle and disease created muscle changes to at least be back at 'par' and the only weakness be attributed to the acetylcholine problem and not actual weak muscles on top of things.

Makes sense to me.

Take care,

Well, I can understand not wanting to see a doctor but it is not a good idea if you have MG. MG can get so bad that the chest wall muscles don't "work" well or at all anymore and you can go into what is called an "MG crisis." It's a dangerous situation.

Do you have double vision these days? With MG, if you close one eye, the double vision goes away. It's called binocular double vision. Monocular DV has other causes and the DV is still there upon closing one eye. It's not an "eye" problem per say but a muscle problem. Seeing those other eye doctors does not preclude you from seeing a neuro-ophthalmologist. As you should.

An internist can run the Acetylcholine Receptor Binding and Modulating antibodies, as well as the MuSK antibodies.

You can see those two doctors and, if you have results that lean towards MG, your primary doc can refer you on to a GOOD neurologist.

If you are having trouble breathing, you should also be assessed by a pulmonologist. They can tell by breathing tests if you have a neuromuscular condition, whether that is MG or not.

If you are this bad, then your quality of life can't be all that great. MG is dangerous, don't underestimate it. If you have MG, then you NEED help as soon as possible.

You can take photos of your face after sleeping and then again later in the day to see if there is a difference.

The bottom line here is that you really ought to see a doctor. It's way too dangerous not to. Oh, and lazy eye is not a diagnosis in and of itself. Lazy eye is caused by things like ptosis and it sounds like yours is fatigable, since it comes and goes. Fatigable muscle weakness is unique to MG. Well, and LEMS and CMS.

I hope you will get help soon.

Annie

Hi there. I sure know how hard it can be around finding a neuro. I recently went to RateMDs.com and found a stellar revew for the ENT I am seeing Thursday. I found 2 neuros there that sound promising for you in Birmingham. There are others. These are the top 2 and have patient reviews which I persoanlly like.
The docs are Dr Emily Riser and Dr Camilo Gomez. Check it out and see. I cant link there as you need to log in.

Annie59

Quote:

Originally Posted by AnnieB3 (Post 729286)

It is just having been a bit less than hopeful/optimistic after seeing so many with always the same non result, then I start to question my own sanity and on and on it goes..

This doesn't mean that I am stubbornly unsafe,.. I have every intention of continuing to seek medical help, just highly frustrated is all I suppose.

Yes, I've read of the MG crisis,.. it can literally be 'deadly'.. I do understand the seriousness.

Quote:

Do you have double vision these days? With MG, if you close one eye, the double vision goes away. It's called binocular double vision. Monocular DV has other causes and the DV is still there upon closing one eye. It's not an "eye" problem per say but a muscle problem. Seeing those other eye doctors does not preclude you from seeing a neuro-ophthalmologist. As you should.

Not so much. I sort of said that in my reply,.. but it would be easy to get it lost/confused in that length.

I am very very, too much so actually, well versed in eye disorders from muscle imbalance, cornea problems, tear film, lens disease, vitreous humor issues, to even retina issues. As such I am very aware of binocular diplopia vs monocular diplopia.

Thing is I have 'had' both. The eye drifting away obviously causes binocular, and the monocular is without a real known cause as of yet. The monocular is what exists now very often, and is more a 'ghosting' of things than a completely separate double image.

The only thing I think would be tied to MG is the binocular double vision which was a result of the left eye moving away causing a temporary misalignment. (Muscular) . Though there can be neurological reasons for the same problem,.. and even just weak eye muscles can create it without MG or other disease. This is commonly a result of what is known as convergence insufficiency. But enough about 'eyes'..

[quote]

An internist can run the Acetylcholine Receptor Binding and Modulating antibodies, as well as the MuSK antibodies.

You can see those two doctors and, if you have results that lean towards MG, your primary doc can refer you on to a GOOD neurologist.
[quote]

Sounds like a reasonable plan.. I do have intention of bringing this up with my Primary -- just not certain how I should and not lose any more 'sanity' or 'over-reacting' points. After so many symptoms, and suspicions from both him and I.. all turning up negative thus far.. I really have to just forget if my doctor thinks I'm nuts, etc.. and just think,.. the purpose here is to get these tests run, which he will do -- no reason he shouldn't.

He wanted me to go to a psychiatric services clinic and get a "Neuro-Psych Evaluation" before my next visit. I suppose to determine where my level of memory, and all types of cognitive dysfunction I report really stand in terms of such a test. I also suppose this delves into the psyche and perhaps wants to know their conclusion of psychiatric reasons for my myriad of symptoms. I don't mind so much getting tested, I just have had many bills to pay and did not want to schedule another appointment for this 'test' before paying the others which I have recently done. I do have my doubts of the helpfulness of this test, and it sounds expensive. (My insurance is 80/20 BlueCross) -- But I think I need to do this to stay on his 'plan'. A patient can't really selectively pick what advice to take from the doctor and expect the doctor to figure things out -- so this would be more for him than myself.

I am debating finding another Primary and sort of start fresh with my records of all tests already run and the results and let him go from there. Big problem with that is there really is no way to find the 1 in 100 'good' doctor who will take you seriously and be committed to getting you well. There is no 'search function' to find the 'best' doctors around you and so on. It is really, even with referrals from friends, just a shot in the dark.

So tips on finding my first doctor I actually trust and am comfortable with would be awesome. :)

Quote:

If you are having trouble breathing, you should also be assessed by a pulmonologist. They can tell by breathing tests if you have a neuromuscular condition, whether that is MG or not.

Lots of different specialists.. who to see first,.. there could be an argument for a half a dozen more with my symptoms -- Money is an issue of course. However, I do not believe I am moving into MG crisis .. my stomach just feels weak mainly when I am sitting in a chair. Standing up I don't really notice it. If I was having trouble getting air I wouldn't just sit around, that would scare me into action.

Quote:

If you are this bad, then your quality of life can't be all that great. MG is dangerous, don't underestimate it. If you have MG, then you NEED help as soon as possible.

No, quality of life is very low,.. and is really somewhere I never expected to be nor even really thought existed. But it is what it is.. I need help regardless of what exactly this is.. the frustration is seeking help has , so far, after over a year brought me none. It isn't for a lack of trying, I assure you. Again, I am not finished.. never will be.

Quote:

I hope you will get help soon.

Annie

AnnieB3.. Thanks, I appreciate the reply and well wishes.

Annie59: Thanks for the website, and the specific two you found. I will check them out! I need a good website to rate all sorts of doctors.

Thing is, where I live, Birmingham is among the best locations in the Southeast for medical. In large part due to the UAB college which has one of the nations top medical schools which presents and draws alot of talent. So I don't believe I have a shortage of doctors, just finding the right one who will happen to test or discover the right thing to finally figure out what is plaguing me. If it is MG, then so be it.. but everyone has to understand my lack of enthusiasm to some degree because I have thought it was a number of things only to be tested wrong. Again, doesn't mean I won't or don't want to get more opinions and tests.. Just it will be like winning the lottery the day someone actually finds a positive diagnosis on something.

I really wish they could take a pint of blood or so and test for hundreds of thousands of diseases to cover a broad spectrum in one blow instead of just a few per time that cost hundreds of dollars after insurance. Maybe in the future there will be a better detection method,.. for now it still rely's on the diagnostic skills of the physician and tests to confirm.

Thanks again

There's a company working on a "drop of blood" test in CA. Who knows when it will be "on the market."

A new primary doctor may be a good idea, or at least seek out a 2nd opinion. A primary doc can run the MG antibodies too.

I hope you can get someone who takes your symptoms seriously.

Annie

Quote:

Originally Posted by Chromatic (Post 729306)

Hi Chromatic--I, too, live in Birmingham and although I do not have MG, I have experience with it as my mother was diagnosed at the age of 92 1/2 last year. First, I am sorry you are going through this...I know it is hard and frustrating. Secondly, UAB DOES accept BCBS of Alabama. Viva is their commercial line of insurance that they sell but they do accept BCBS. They also provide a Medicare Advantage program, Viva Medicare, which is the only MA plan they accept...perhaps that is where the confusion lies.

I would recommend Dr. Gwen Claussen at UAB...you can reach her through the Kirklin Clinic. She specializes in neuromuscular diseases and is the MG guru here. Her number is 205-934-9999. You may need a referral from your primary doctor, I'm not sure on that as we went to her following my mother's hospital diagnosis. She is wonderful...not only knowledgeable, but extremely caring and personable. Wishing you the very best of everything.

Quote:

Originally Posted by Chromatic (Post 728252)

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 :winky:

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,

When I first saw a neuro, it was because the doctor that specializes in fibromyalgia said I did not have it, but I was still falling. I didn't fall everyday, but the times I did fall were unusual. I got where I would lose my balance easy. I was sent to a neuro due to that. He took blood work, and when it came back positive, he decided to wait a year to see how I was doing. I lost my voice during that year. I stay hoarse all the time. Over Christmas, I rested all day after Christmas Day, and I actually heard my real voice off and on for 2 whole days. A family member even commented on how good I sounded on the phone during this time. This has been going on over a year with my voice. Then I started going places and went back to work, and now I am hoarse again. When I get excited, overwhelmed, or nervous my voice goes. When I rest and relax and talk in a calm voice, I actually get another glimpse at the real sound from time to time. Two ENTs wanted me to go to voice because one thought it was stomach acid and another thought dysphonia. I have a lot of pain in my legs but I've learned to live with that. I do notice, however, since I am on Mestinon, the pain has gotten better and it is more of a tooth ache feeling 24/7. I too have general weakness all over. I am sorry for you. I feel as if I have been down your road many many times. I hardly hear anyone speak of being hoarse until you did. I do wish you well. I don't live anywhere near your state, so I am unable to help you find a doctor. It has taken me years to get help, but I am sure you will find the right one. You have to keep the faith. I did. That was my only hope that someday, someone could help me. busy

I feel the same way

I am so happy i found this site. I am feeling all the same things you are

Quote:

Originally Posted by Chromatic (Post 728252)

i was just diagnosed

I was just diagnosed. On 23rd of November, 2010. so far i have read everything possible that can be read. I know that it is a very frustrating disease and that can ruin your spirit, but I am not giving up. I feel some incredible happiness because I finally know, after six months of telling me it is nothing, that i have just lost some confidence:), i finally know what is wrong with me and I am happy that there is a cure. i have the best doctor in the world. Actually I come from Macedonia, it is a small country in the Balkans, and feel overwhelmed because of this opportunities that I can talk with people all over the world.
Myasthenia is boring, but not so dangerous. The most important thing is to learn how to live with it. so far I am great, and getting better every day. I take only prednisone, started from 120 mg, now I am on 65, and getting off 5 mg a week, till I get to 20mg. I had some fatigue in my knees, but these last three days it is gone.
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