MG?
 

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,

Hi, and welcome. I can't answer all of your specific questions, but your symptoms certainly justify being tested for MG! There is a blood test for antibodies (though testing negative doesn't rule out MG) and there's a specialized electromyogram test (single fiber EMG). Many people are diagnosed by one or both of these tests.

You absolutely should be seeing a neurologist, and not just a GP. See if you can find one who specializes in neuromuscular diseases!

I sure hope you can find some answers soon.

Abby

Abby is absolutely right. You need a good neurologist. And you need to get a copy of your past medical records to start your own file. Keep excellent records going forward and always get copies of future test results, etc. to keep your file updated.

Some folks here have been extremely lucky with diagnosis in a reasonable amount to time (like less than a year!). For others it has taken much more persistence over a much longer period of time. And still others, continue to struggle to get their diagnosis.

Be persistent, keep good records, don't assume anything, and have faith and confidence that you know more about what is normal (and not normal) for your body than any doc ever will!

If you can let the forum know what US state (or country) you live in - there are lots of folks who could probably recommend a good university med center (or maybe even a good doc in your area) with whom they have had experience.

Good Luck in your Journey - - and ask the forum whatever you want. There are a bunch of really terrific folks here (though it can be a bit quiet over the Holidays!)

Welcome to the group - look forward to seeing more of your posts.
Sue

nerve tests
 

I have had very weak muscles for over 10 years. Just got a diagnose of MG about three months ago. All of my blood tests came back negative but I had the single nerve EMG and all of pointed to MG. You really should go to a neurologist that will give you a complete Neurology exam,blood tests and is knowledgeable about EMG Nerve testing. I guess my MG is called seronegative which is a rare form of MG due to tests coming back negative. I fall quite a bit but luckily just a split head on the back, broken ankle and bruises. Its quite scary. I am on 40mg of Prednisone daily which was recently increased to this dosage so I guess I have to give it sometime. I went to a Physical Therapist per the request of my Neurologist to help me strengthen my body. If a person with MG overdoes the exercise it may make the fatigue/weakness worse and need to rest the body for awhile. My PT told me just do these easy arm exercise with light weights, easy squats, core workout (also easy) and back ones. Then rest afterwards.I cannot run anymore as I will just fall. People, this disease is so frustrating isnt it? Again,please see a Neurologist.

Take care

Sue

Thanks for the replies.

So get in with a Neurologist. Sounds good to me,.. but the right one for my symptoms..

I will relist my main complaints..

1) Brain fog/cognitive function -- feel way below par, creates anxiety etc.

2) Visual -- Tied into the first symptom heavily I believe.

3) Pain -- Primarily Neck and Back ( in a few specific spots, and some not so specific)

4) Muscle weakness -- all over.

That would cover the main complaints.. just going into detail with these things is difficult because none of them are cut and dry things like.. Doc, it hurts here, and only here -- (Doc takes Xray, Ahh little guy, it is broken.. lets fix that up.)

I think to myself, when a doctor asks me.. "So what seems to be the problem today?" .. It is more, what is not the problem? Sounds ridiculous .. but sadly it is harder to find things that are working as they should than not.

Would a neurologist be capable of better diagnosing my pain in my neck and back? The GP took a Xray, and ran a blood test for Rheumatoid factor and Ankylosing Spondilitis. Thats it.. I asked several times about "Doc, what about my pain? What is it? What can I do about it? " -- He just didn't know.. said things like.. well, it might be a Fibromyalgia .. or just from depression. He gave me 'Mobic' after I asked him several times. It might help some people, but useless for me, besides I want to figure out why I am hurting everyday, all day, for not discernible reason. This started in my late 20's.. I didn't get into any accident that spurred this on.. it makes zero sense! Further frustrating to have doctors just brush it aside like it is no big deal. If I could only have my doctor live a day in my life.. just to feel and see what is really happening I think he might take things a little more seriously.

Anyhow -- I think I need an MRI of my neck and entire spine (even pelvis/hips perhaps in there) -- but the entire spine in one shot should give some clues as to what is going on "pain wise".

Who knows, maybe something in the spine is creating some of my other symptoms (or some of them).. it isn't out of the realm of possibility.

I would like a team of doctors to do a bajillion tests and just keep on till they figured out what ALL was wrong and how to treat it. I'm sick of burning money on these 10 minute appointments that result in no progress.

There is a medical school close to me.. UAB (One of the top) .. but it is on a specific insurance they own.. 'Viva' .. I have Bluecross.. so I don't really know how that would work out.

I live in the Birmingham , AL area.

Thanks for any help you can provide. I am always skeptical of going to new doctors cause from 'my' experience they most all don't have a clue. I have met one or two in my lifetime that truly were detective like,.. in that they always got to the bottom of even the most odd cases.. and were also incredibly intelligent. Generally a doctor is going to be pretty intelligent in general,.. but most of them for numerous reasons just aren't qualified to do much more than diagnose and treat anything but the common everyday problems seen. Which makes sense,.. but I need a Doctor House with a team lol.. only with a little empathy.

I really don't care much about anything as long as some answers come -- though I am fed up with the mental illness card being played so quickly and being the 'catch all' for anything that doesn't neatly fall into one of a handful of common diagnosis. I really think using "depression and anxiety" as a pathology shows the lack of willingness, and perhaps ability of the doctor at hand... while also undermining many patients self confidence and just doing more harm than good.

So if anyone has a referal/recommendation to a superman neurologist who would fit my case well.. I'm all ears. :) -- Or anything else for guidance.

There are so many specialists , and money doesn't grow on trees... But my quality of life is so low that I'm willing to spend all I have until some answers come forth. What else better does one have to do while in such a state of being but to advocate for themselves and hope that one of these days someone will actually find something that will help explain some of this. When that happens then finally one can move on to the next step -- ok so it is This (and maybe that).. now that we know,.. we can treat with X, Y, or Z.

Thanks,

Hi
I would like to add my 2 cents. My sister and I both were just dx with MG and our experence with neuro's were the same. A neuro looks for a "black and white" answer to this complex disease and a lot of the time there is not a "black and white" answer. My first blood panel came back neg. The neuro was stumped and referred me to a neuro-opto who examined me and said I had MG or he would "eat his hat" he didn't care about the blood work. Next I was referred to a neuro-muscle and he agreed it was MG. Then the next blood work came back positive. I was told that regular neuro's rarely see MG cases and have great difficulty dx'ing it. You really need to see someone who has seen more than one or two cases in their career.
Good Luck
Mike

Hi and welcome, Chromatic. Interesting name.

MG is what is considered a "head and down" disease. It often starts with facial symptoms such as ptosis (toe-sis), a.k.a. droopy eyelids, and neck weakness. Guess what neck weakness causes? Pain. If your neck muscles are weak, good luck holding up your head well. This muscle weakness can also lead to a odd headache. An x-ray or MRI can't "see" that muscle weakness. Only a clinical exam by a neurologist can!

Brain fog/cognitive function, or dysfunction, are still fairly general terms. Do you get more unable to focus or "think" after you do things? MG is all about muscle weakness upon exertion. So the more you do, the weaker you get and the more "brain fog" you can get. So if you have periods of being more alert and then do something and are worse, it could be MG.

For anything visual, you need to be seeing a neuro-ophthalmologist. Do not go to a "regular" optometrist. N-O's have the tools to see if you have double vision, if it is fatigable and what the possible causes are. Do your eyelids, eyebrows or any other facial features "droop?" Have you taken any photos of your face, like first thing in the morning after a refreshing night's sleep and then again later in the day? That can be very revealing.

Muscle weakness can be caused by many things but it is indeed neurologists who are the specialists who evaluate that. Rheumatologists deal with "itis" or inflammatory diseases such as lupus. Were the RA Factor and Ankylosing Spondylitis tests positive or negative? Actually, there is not one specific test for AS. There is the HLA B27 blood test but that doesn't mean someone will get the disease. It's more of a clinical diagnosis.

MG is a clinical diagnosis, backed up with tests. It is so easy to have the Acetylcholine Receptor antibody tests done. They only do binding and modulating tests now and they should do both. They used to do blocking, and some still do, but they found it not to be diagnostically useful.

I hope I have addressed your basic concerns. You need to see a neurologist. I don't know any in your area. It might be a good idea to see a neuro-ophthalmologist first. And here's a heads up . . . neuros don't like patients who "think they know what is wrong with them." Very arrogant bunch of doctors, in my opinion. So it's good to stay very simple with them, like "My muscles feel weak" and wait for them to ask the questions.:eek:

If you are very weak or short of breath (are you?), then you need to seek out help in an ER. MG can be life threatening, especially when a person is undiagnosed and not on any meds. In case you do have MG, you need to seek that help out. There are meds that can make MG worse too. Are you on any medications for other conditions?

MG is not simple but it's fairly easy to diagnose if you get a good neurologist. I hope you will and get some answers.

Annie

Thanks Annie,.. very informative reply.

I've 'self-examined' alot, in fact, likely *too* much as I am analytical by nature. So I have researched for years what "It could be".. and have a general interest in science, and as a sub factor medicine. So have a great deal of knowledge on the human body, chemistry, biology, and disease. That said, the more I learn the more I understand the more I don't know.. and to take that a little further the more I personally understand even a specialized doctor is just a tool. Unlike many people I realize doctors don't *know all*, simply because the amount of knowledge to 'know' and then on top of that know intimately is literally limitless. Even broken down into a specialty it is still too vast to have a golden grip on anything. Don't misunderstand me, I believe doctors are valuable tools, but I also think we must self-advocate and a large part of that is using our own brains to understand what may be going on with us.

I not only have a belief, but I know there are many people with better understandings of specific diseases than the specialists they are seeing. On the other side, there are many people who don't believe they can *understand* complicated medical jargon and thus don't attempt to learn and pin their short and longterm prognosis on very few doctors. The attitude of , "Well the doctor said X , why should I believe anything else.. he/she is the one who went to school for this." Or similar, is logical,.. but ultimately flawed. My opinion is not of cynicism, or jade. It is merely the result of experience and taking logic a few steps further.

Ultimately it means little in the overall process -- but it is good to understand for ones own 'hope',.. and equally important our desire to press on and get 2nd, 3rd, or more opinions and clarification in somewhat complex symptomatology we possess with disease process such as myasthenia gravis.



[quote]

I do believe I have ptosis , more notable on my left eye than the right. Though with MG it seems to be a condition of very obvious worsening of all symptoms after 'doing'. It is a disease of fatigue. With this I am not personally convinced I have it. I feel terrible from the second I wake up all throughout the day. I do feel worse at times, going from bad to worse.. but really for no discernible reason(s). Though also I can't get over just sitting in a chair, lately, and feeling my abdominal muscles 'give out'.. or feel like I just did thousands of crunches and they just can't hold me up. So I have to hunch over to take the load off them and my back muscles. Trouble is, this puts all the load on my spine.. which may or may not be responsible for my neck and back pain. Xrays so far , 2 sets, 2 doctors, revealed nothing to them. I know not only is this a very low resolution image, but being only quickly scanned over by "General practitioners" is not exactly the optimal method of diagnoses. That said, it is better than an obvious deformity from disease pathology .. ie: Arthritis, or other autoimmune processes.

I'm sure I do have a worsening of my 'brain fog' after specific activity,.. though it is hard to gauge. As I said things have evolved into a constant state.. not really a "Hey, I feel pretty normal today, or now.. then later.. oh man I feel bad.". I seem to have more periods of weeks or months of severity and then a *not as bad* period.. but still far from acceptable.

I've been to two optometrists , and 1 ophthalmologist -- so a little too late on the seeing an inappropriate doctor. As for the eyes, I do think, at least, I have some issue from the cornea outward -- at the worst, a dystrophy of the cornea that does not involve thinning, but disrupts the membrane obscuring vision -- to at "best" a dry eye condition. As for the movement of vision I just can't explain it away, or make sense of it -- other than either physical movement of the eyes of a microscopic genre, or a vestibular/ocular issue.

I may see a neuro-ophthalmologist in the future, but finding the right doctor is tough after seeing quite a few in the same 'field'.

As for photos.. I have plenty of them, but haven't specifically taken them right upon waking, then later in the day and labeled them.

I do recall when I was in the hospital for a few weeks with a very unrelated acute kidney problem (a one off).. and after my body had recovered fully and I came home.. everyone said I looked "peeked".

I had no idea what that word meant.. and when I asked they pointed to my eyes and apparently it is when the eyelids droop a great deal over both eyes. I noticed it very much in the mirror and it was the same morning or night. The point to this observation was my eyelids were really drooping after the hospital stay and now have gone back to my 'normal'. I thought of the temporary dialysis sessions I had there, and how weak I felt.. and thought of the blood disorder MG is and thought they , perhaps, could be related. Not sure. (Again, this was an acute kidney problem that does not effect my current or future health,.. and is not related to any of my symptoms.)

Yes, as far as *I* know the RA and B27 genetic test were negative. I do believe I would have been treated if they were not. I understand about the AS,.. a large percentage of the population tests positive for the gene, but very few get it. Since I tested negative, I assume the doctor took that as enough to 'rule it out'. When in fact it is a little dangerous to rule out completely with unresolved clinical presentation. Though, with a myriad of symptoms without positive results one cannot hold onto everything.

With all of this, something is causing my pain, something my weakness, my cognitive problems, vision, and so on. I believe that much of it is likely systemic.. I think it is much more likely that one disease process is creating multiple symptoms than a host of 4-6 different diseases causing all separate symptoms. Just unknown right now.

I have not had any consideration for MG by any doctor. I have just personally learned of it.. and muscle weakness has not been a chief complaint - so I don't think I have signaled any doctor to key in on this specific possibility. This doesn't mean I haven't had muscle weakness for a while.. just that I tend to be a bit stoic by nature, and other symptoms become more bothersome to 'me'.. such as the vision, mental changes, and the pain. I have a hard enough time with those several symptoms trying to condense their symptomatology into a few minutes rather than include every daily symptom to the doctor. I wish a good doctor would take a written list of symptoms from me and research it himself, combined with his experience and med school (perhaps consultation with colleagues) may find a few strong candidates to follow up on.

I just don't think the common 10 minutes of time every 6 weeks (or more) is enough to form a solid diagnosis. Though I have yet to find a good solid doctor who gives patients a big chunk of time if needed. It just isn't the nature of the beast, unfortunately. I think most people with specific single complaints or just routine checkups get by fine with this amount of time.. but the more 'rare' patient with life altering symptomatology needs a good bit of time set aside. The cost surely justify's it. :) -- An issue that does not have an answer on this forum.. but still is difficult for many to contend with.


You have. Thanks again.

And.. yes, no doctor, imo, likes patients who think they know what the problem is. They don't like people who have spent time researching illness, and so on. I can understand why in many cases (even my own I'm sure), where the research leads to at least unnecessary worry, and at most causes the 'visits' to be less productive. I understand sort of 'fishing' for questioning to not insult the doctor and allow them to think they came up with the diagnosis to 'test' or check on. Reporting specific symptoms that likely would clue any competent physician in on MG, or other problems is not terribly difficult. (If in fact, they are real.. ) -- I actually am very 'good' at doctors and do not over step my bounds, and likely am a bit reserved and have room to push a bit harder without overstepping bounds.

I just try to give symptoms and not 'lead' them .. to see where they go with things.. because as I mentioned earlier.. no one can think of them all or can possibly have a good grasp on ALL things possible. If I feel my worries are not being considered at another visit I will likely change the approach.

Example: With my GP, over half a dozen visits I presented more and more symptoms as to not overwhelm him on the first visit with a dozen symptoms. I didn't want to come across as a hypochondriac , obsessive, or any other thought. Illness can easily be dismissed on grounds of some psychosomatic, or psychiatric (same thing) grounds if someone mentions a horde of symptoms.. even if they are ALL true. The rare, or uncommon just is hard to believe right off the bat with someone who isn't bleeding from the eyes, or have yellow eyes and skin, etc. (IE: Overtly obvious signs without questioning).

I am weak, and feel as if I have times of breathing difficulty -- but overall the breathing, I don't believe, is a problem. If I thought I was at danger of needing emergency care, I would seek it. I actually don't completely think a bit more obvious and serious signs are entirely a bad thing. The 'optimistic' view on something a bit more severe is that it would be undeniable and very likely a strong queue to lead to a diagnosis. Not that I wish anything on myself.. just if something did occur maybe some answers could be had is all.

I take klonopin (clonazepam) for insomnia that I have been taking since I was 19 yrs old. I am 31 now. I was given a dose of 3mg at about age 20.. and at my last visit with my current GP, we decided to wean me off of it to see if it had effect on my cognitive problems. I have weaned from 3 to 1 mg daily now. Other than increased anxiety ( which is very expected with such a medicines long term withdrawal).. I don't think anything else is happening. As for it causing anything.. it certainly didn't for at least 5-6 years.. so it isn't a likely candidate. Though I am still not ruling it out, which is why I am discontinuing it. Other than this, nothing else.

A neurologist is definitely in my mind now, more than before. There are a great deal of specialists out there, and it is hard to see them all for many reasons. So trying to narrow down who to see and who first with such a myriad of overlapping symptoms is part of what I'm after.

Other than the symptoms, I am having a hard time dealing with my family thinking this is psychosomatic, or mostly such.. some more than others -- I have no history of chronic illness that is caused by psychosomatic symptoms.. but their belief is merely a result of somewhat long term seeking of a diagnosis without much in the way of results. So if after so long no one knows what is wrong, there is nothing wrong. (Obviously difficult for anyone who has to live with the problem(s) to live with..) When it is your family it is hard to just 'not care'.. or 'ignore' what they think. You don't want to write them off.. So things have largely come to just not discussing anything regarding it with them.. but symptoms have their limitations, etc.

Anyhow, I thank you.. and just wish there was an easy way to really be confident in having or not having MG before seeing a doctor to diagnose and treat. The only test I've read about it using cold for ptosis to see if it makes any changes. Anything else ? Neurologists are bound to do some physical tests that we could do ourselves to get a general idea?

Take care,

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

Sue, I am intersted in your phys therapy work. Can you message me personally? Annie59

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

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.

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. :)

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.

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.

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

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.

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

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.
***

physical therapy
 

I was given a few easy arm exercises with 2-3# weights. Tricept and bicept curls. Using a band to wrap around a post or doorknob and doing "rowing" moves with that as long as you can do them for..usually 25. Also was given some lower body easy exercises to strengthen my core,back and legs.I don't overdo it as it would take awhile for me to recuperate. I also added a few easy Yoga positions. My physical therapist said that Yoga would be good. I am looking into Tai Chi as my balance is so bad and the tai chi looks like it would help with that.I try the treadmill when it suites me to get some cardio. I would love to go outside and walk, but since there are still some slick areas from the snow falls, I don't dare do that. Walking on ice just doesn't go with MG!
Sue