I can't get into my preferred neurologist for quite some time -- so I am curious what things can you list that are nearly universal that most all MG'ers experience and when they do X, Y, or Z cause some sort of undeniable effect?

I want to test a bit of this , (safely) , on myself.

I've seen the looking up test, and I 'feel' like I am failing it -- but it is really hard to determine on your own.

I've held my arms out straight, and they feel like they want to come crumbling down but I can 'tough it out' for the alloted time that would be 'normal' or passing.

Just curious what things you guys know from your experience that are common and will most always happen.

I do not believe I am in any danger of respiratory 'crisis' or the like -- as I've had these symptoms going on 6 years or so, and nothing has ever lead to me noticing I couldn't breath.

Thanks,

Hi,

First, its great that you do not have any life-threatening symptoms.

Second, my advice is not to "rehearse" for your physician.

A good physician will know what questions to ask and how to pick the needles from the haystacks.

Sometimes it may take a while, but if you come to him with a list of things that seem to fit, more likely than not , he will find it hard to make sense of it, or feel that you are trying to lead him in a certain direction.

My advice is to ask yourself what bothers you most, and concentrate on that first.

Come to him as you would come to a knowledgeable friend that you think could help.

If you feel its appropriate and he seems attentive to what you think could be going on (after all, after 6 years it is quite likely that you have searched it out for yourself), then you can gently mention that you thought at least some of your symptoms could fit MG.

And most important during the visit in his clinic, and the way he responds, ask yourself if you feel he/she is the right physician for you.
Some physicians don't know how to deal with a patient with a "mystery illness" and others will become your partners and do their best in working out the best management approach.

After all, what you are really interested in is not the fancy name of you illness, but to receive treatment that will make you better. So, finding someone who will make a brilliant diagnosis, but not do much from there is not what you are looking for.

Hope some of this helps,

None that I am aware of... But from what I understand with MG is things can change in a hurry for some people,.. and no two people are identical, ... So I may have a quite dysfunctional case of symptoms .. as of now it isn't causing respiratory problems.

I never have. I've seen several physicians over the past several years, not rehearsed for them.. and have gotten lackluster results to put it lightly. Some seem like I know more than they do, -- example: One GP said "You know, I don't all that 'stuff' but I can point you to someone who does". Although she never did "point me". I've had one that just gave me a blank stare after I opened up and admitted I had some serious issues that were really effecting my daily functioning. He had no answers.. he was just sitting there listening like he was a psychologist

The third GP/PCP seems smart,.. and has run more tests than all the others (which they've only run one XRAY),.. but he is coming up with nothing, and I sort of dropped him after he was getting no where with his, lets run this blood work (oh and what is your main complaint?) and see me in 8 weeks... run around.

I've yet to mention Myasthenia Gravis to any PCP/GP -- mainly because it is really a neurologists position and I really only learned of it and believed it applied to me somewhat recently.

So I sort of need a 'game plan' going in.. if not for the doctor's benefit for my own self confidence of the appointment.

You see, I've been let down so many times, and spent so much money with doctors for, so far, no results that everytime that happens the possibility of finding an answer and getting better becomes further and further away. I don't know why, but it really bothers me when I leave a doctors office and have been basically run through a machine of sorts, money taken, and brushed off without any 'plan' to figure things out.

Yeah, but finding this guy is like finding a needle in a haystack. (for me).

Hrmm.. well it is quite hard to pick out the worst. But I guess I would sum things up with my vision being number one bothersome disorienting factor, followed by pain, then weakness, and what I can only describe as "cognitive difficulty". Which I can only give examples to explain that one.. IE: Short term memory issues, working memory issues, forgetting why I walked into a room, or why I opened a drawer, simple things that I do remember a few minutes later, but should be accessed immediately. I have to actively TRY to think hard and concentrate to say, make a sandwich.

I feel like I'm in this constant fog, disorientation, which makes you anxious and feel weird. With my vision being double, with starbursts, and halos,.. plus slightly vibrating (like a heat shimmer) 24 hours a day I can't decide if the vision makes me disoriented or it is just another side 'effect'.

I put what most people would put first.. the constant pain and stiffness in neck and back (and general body) and weakness as the lower on my list.. because having your mind feel off is scary stuff..

This would be SO much simpler if I just had one of these issues going on, so I could easily just walk in and say, Doc.. it hurts here.. whatsup?

For the eyes I've been to an optometrist and ophthalmologist who both find nothing 'physically' wrong the eyes. So it perplexes me -- either I'm hallucinating 24 hours a day, .. in the same way for the past 6 years.. or something has been missed. Perhaps neurologic.

Exactly -- I have yet to find a doctor who I feel confident is COCKY enough, and smart enough in their ability to say.. Look ,.. we WILL figure this out. It may take some time, and testing,.. but we will get to the bottom of this I won't give up on you.

That is what I need. Someone I can finally drop this burden on.. that I have faith will do their job to figure it out and I can be the PATIENT and just follow orders till we find things out.

I have no problem if a doctor is thinking, man I don't want to deal with a patient like this.. or I have no idea what this could be .. if they would just tell me right away the truth , and that I should move on to someone else. Problem is many of them just don't like to admit when they don't know,.. or don't care to find out -- so will either just give a diagnosis that has no treatment.. or tell you it is Anxiety. Psychosomatic only goes so far, imo.

No I could care less about what its called. I've told my PCP this -- I've told him, I don't care if you tell me I have to stand on my head as treatment, if it works, it works.. (not being literal of course). I just want to feel better , to have some semblance of the quality of life I should have at this point in my life. No one is at fault here,.. but this stuff isn't free, so you do have to make your picks.. and there really is no rhyme or reason or great methodology of finding this 'great' doctor.

What was great for one person.. may be terrible for you. I've found you have about as much luck finding one throwing darts at the yellow pages as you do trying to research a doctors credentials.

Sure it does -- I appreciate it.

I'd still like to know what some of you do that you notice applys to most all MG'ers to make things worse noticeably. I'm curious.

Take care,

Hi Neofate,
you know you sound just like I was 3 yrs. ago on the vitamin forum. I had already been having trouble for approx. 3 yrs. The weakness, and double vision, and slurring of words. I thought several times I was having a stroke. The er doc also said I was having possible TIA's. I was having my right eyelid almost closed at certain times. I wasn't able to walk or talk either. The doc I was seeing looked at me like I was already gone, and he was just going through the motions. I also had no way to pay for insurance, and very few doc visits. As the years went by, without me having any closer to knowng what was wrong, except B-12 deficient, low vit D, high TSH levels and extremely low iron levels. It was extremely frustrating. What I did was take pictures of myself when my eyelid was almost closed, and a video of myself when I was slurring my words and unable to walk. I got a new doc, and he ran all kinds of tests, and couldn't find the problem. I showed him the picture of me, and he immediately said "you have myasthenia gravis" He ran a blood test to ck the antibodies and also a tenlison(?) test. That was about 3 wks ago. What seems to make my symptons worst is #1 stress. Perhaps an arguement, or a deadline, or even pressure to try and complete one thing on my list. Also as we all on here know is laboring, such as trying to get the groceries in the house from the car. Trying to clean the shower. Simple things that we take for granted we can do. I know this is long, and I don't think I have answered your questions. Wish I could say the right thing, bt all I can say is the people here are great. Nothing but good vibes to you....

The problem is with your physicians, not with you.
Turning yourself into a "good" patient for them is not going to help. Finding someone who is not like that-will.
And yes, it is hard as hell to find a physician who can deal with a reasonably intelligent and knowledgeable person, who has an illness that doesn't seem to fit the book. But, being such a person and having such an illness you really have no choice. And such physicians do exist, even if unfortunately they are not the majority.
Trust me, it doesn't make that much of a difference if they say they don't know what your illness is, or tell you that you definitely have myasthenia, but none of your symptoms really fit. Or decide that you are in remission, when the treatment they gave you led to a severe deterioration in your condition. Or even worse tell you that your illness is so severe, unusual and hard to treat that its not worth their time and effort. Or, who knows, maybe you are just so smart that you deliberately faked it, because having such an illness is so unlikely that it just can't exist. Knowing that you have a potentially treatable illness and your treating physicians don't seem to give a damn, was for me at least the hardest of all.
And last but not least, some of the symptoms you describe as "cognitive difficulty" could be due to a sleep disturbance, related or unrelated to your muscle weakness. I would suggest that if not done yet, try and get a sleep study. also, make sure they measure everything, not only look for oxygen levels.
And remember that modern medicine with all its unquestionable advances still has its limitations and can't always help all the patients, even those with known and easy to diagnose diseases. Many times it takes a lot of patience and ups and downs before you start to experience any true improvement.
Quite a few patients with known, diagnosed and treated myasthenia, suffer from symptoms which are not less severe than yours.
There are many tools and aids that can help you lead a reasonably productive life, despite that. So, alongside searching for medical answers, try to find what else can help.

As understandably as you say- As to your question what will nearly always make MG worse- physically using your muscles beyond their ability at that time. For one person it can be running and for another it can be walking a few steps, talking a few more sentences or trying to read. And for the same person it can be different at different times.
The hallmark of myasthenia is fatigable muscle weakness, which means that with repeat use of that muscle it becomes less effective.
The same cup you easily held in your hand a few minutes ago, becomes (just like in Alice in wonderland) as heavy to pick up as the whole table with the dishes and cups. A very reasonable distance to walk, becomes like climbing the Everest when you try to walk back. One day you manage to do everything you planned to do (within your limitations) and the next day you find it hard to even get out of bed, without someone helping you.

..Yes Alice MD, I agree about knowing that the more you repeatally use your muscles, with M.G. the weaker they become.

I was so excited when my primary Doctor told me to swallow after I told him I can't and I can't even swallow my saliva. He went and got me a glass a water to drink and commanded I drink a sip, so I did, which really surprised me, the doctor and my husband, well anyway, the excitement is over because I realize now it wasen't the beginning of being able to drink or eat again. It was just a little trick this dark shadow of mine called M.G. is playing on me.
The doctor said each day build on it (the swallowing ability) but after a few days I realize I'm not able to.

You see, yes I'm able to take a few sips of liquid..If I'm not to stressed, If I'm not to far away in the month from my last I.V.I.G., If I'm not too tiered from not sleeping well the night before and If I try for the 19 sip and at the 19 sip my throat muscles say Nooo more.
I can actually feel my swallowing getting harder to click after each swallow until it completely stops.

This is really stressing me out which of course is also bad for the M.G.
I'm going for my 2nd opinion Dec 22. I am so hoping they can fiqure out how to help me.

When I read you post about being able to swallow again, I didn't want to comment because I thought that maybe I am wrong and your doctor did help you get over your fear, so why should I ruin that?

But, to be honest with you, I didn't think he did. I think he is a very nice and caring physician that really wanted to help, but has a very superficial and limited understanding of the complexity of neurological diseases.

I agree with Tatia, that some of what you experience fits movement disorders. What is termed "movement disorders" is usually the result of a brain lesion that leads to loss of the normal control and co-ordination. Many times you can temporarily over-ride it by strong cues. For instance patients with Parkinson's disease who can hardly move, will run when they see fire.
Or patients with Tick disorders can "hold" them for a while, but then they will burst out.

There is a nice study that shows the use of guided imagination and various relaxation techniques leads to decreased tremor in patients with Parkinson's disease, probably again by stimulating other parts of the brain that over-ride the abnormality.

This is not "mind over matter", but a physiological response of the brain.
I think that possibly what you need is not a specialist, but a good general neurologist who has a good understanding of MS, MG and movement disorders. Someone who will see you as a full person and not an EMG result.

Other examples of temporarily overriding movement disorders: Michael J. Fox tremors up to the skating rink, but as soon as he steps on the ice, you can't tell he's sick. There's a video of an old man with Parkinson's who can barely hobble down the hall, but hops on a bicycle and tootles around the parking lot like a young boy. Scott Adams, creator of Dilbert, has spasmodic dysphonia (a form of dystonia with involuntary spasms of the vocal chords) and he couldn't talk, unless he put on a phony British accent, then he could suddenly speak.

Thank you alice md for your words of wisdom. What you are saying makes sense to me. I'll keep you posted with the 2nd opinion on Dec. 22 with the neuromuscular specialist.
Is Movement Disorder a different disease than the M.G. or M.S.? or maybe because of one of them?

Thank you Geode, for this very interesting information. It sure does sound like what my swallowing is going through. I am hoping to find out one way or the other soon. The brain is such a mysterious thing but then again all of life is