What if you never test positive?
 

If the bloodwork all turns out negative, the EMG doesn't really show anything, but you have all of the symptoms, fit the descriptions to a "T", and mestinon works miracles against them,

Is it MG, or is there something else that mestinon also works on, or what?
Or, once all the results are in with nothing on paper to show for it, will the doctors say it's not mg and take away my miracle drug and send me out the door?

Dear winic1,

This is the situation I am in also. Even though I've had tests, all of them have been negative. My symptoms seem very much like myasthenia gravis. Mestinon works for me, and so does IVIG. It is tough without the positive results to tests, which doctors really like to get. However, if you have good doctors on your side, hopefully they will still be willing to treat you anyway. Mestinon is a pretty safe drug. If it is helping you and you are tolerating it okay, then hopefully your doctor will be willing to continue prescribing it. In my case, I kept ending up in the ER and ICU with severe breathing difficulties and weakness, which seemed a lot like a myasthenic crisis. It was scaring my doctors (and me). So they recognize that, even without a formal diagnosis, I need some sort of ongoing treatment. It is a difficult thing, though, and having the right doctors really helps. I hope your doctor will keep prescribing Mestinon for you. Thinking of you.

Take care,
Erin

yeah, it's that "good doctor" part that's scaring me. Almost no such thing around here. My ophthalmologist diagnosed me with MG more than FIVE YEARS ago, but without a positive AChR test, no one else would do anything about it (not even run a further test for MuSK or anything).

And, going back to when I first had clear, severe MG symptoms, it was SIXTEEN years ago, when I was pregnant with my daughter, but MG never even occurred to anyone, and I saw all kinds of specialists for all kinds of things as they tried to figure out what was wrong with me. It was so bad, by the time I microwaved my lunch and got it to a table, I was too weak to lift my arms and eat it. I would just sit there, arms hanging limp at my sides, staring at my food, until I recovered from the exertion of getting it warmed up. I could not stand and talk at the same time, if I was standing, I'd have to heave a giant breath between every two words ["Hey Boss {big gasp} Do you {big gasp} want me to {biiiiig gasp} include the {big gasp} chemical analysis {biiiiiiig gasp, twice} in the re-{nope, not gonna make it, gasp again} -port?"] That bad, if I was standing. Four to six words between breaths if sitting. And no one ever figured it out.

Hoping this new neurologist, who gave me the mestinon despite indicating she didn't think it would do anything, sticks with it now that it so clearly works. I think of it as my miracle pills. Ran into an acquaintance I hadn't talked to in months, she said she's seen me walking the dog and I look so much better than I used to! The nurse who took me down the hallway to the exam room at my gp asked, "I know it's been a while since I saw you, but are you walking better?" They see a couple hundred patients a day there! And she remembered me because I've been so pathetically shuffling along for so long.

"Good" and "Doctor" are two words you rarely put together around here.
Is why I'm afraid for my "miracle pills".

Hopefully your current neurologist will be a good match for you, and continue to prescribe the Mestinon. I'm so glad it's helping you. Do you still see the same ophthalmologist? If so, and you need more advice about doctors, you could try talking with your ophthalmologist. I've found that sometimes if you have one supportive, helpful doctor, that's sometimes a good place to ask for suggestions about other doctors to see. It's sometimes helpful to ask doctors in other specialties if you like them and they are good doctors...if you see a gastroenterologist or pulmonologist you like, for instance, try asking them. They might have good ideas about what neurologists are good in your area, too. That's how I've found my best doctors.

Still sending good wishes your way,
Erin

Wini, listen to Erin; she is giving you some good advice.

I never test positive. Yet, I respond to Mestinon, "had" been diagnosed with Bells Palsy a couple of times, weaken nerves, and have a prominent thymus.

I know this is a tricky disorder, so I wanted to know if race had a role in this. I'm black.

What I discovered as the reason why I never test positive is because 75% of black ocular MG patients were seronegative and 68% of white ocular MG patients were positive in this one study I read.

Now, if I didn't have ocular MG. (The droopy eye was temporary for me. I do have weak eye muscles. However, the typical MG droopy eye only lasted for maybe 2 or 3 months out of my life) I probably would have stood a better chance of showing up positive.

Today, the neurologists -- there were 8 of them -- were split in the middle.
I had every test in the book, and I went back to the older neuro who told me right off the bat that I had MG. He just took one look at me and ordered up some Mestinon. (He was the 2nd doc to tell me. The first one I couldn't understand, because his accent was too thick. Plus, he never gave me anything for it, but something to regenerate my nerves.)

Over the years. . .

Listening to other docs and my own doubts about having the disorder took me on a whirlwind discovery of nothing but seronegative MG.

I went back to the 2nd neuro when my symptoms were worse, and he upped my mestinone. Since, he is about to retire, he referred me to a doctor. She is young but very knowledgeable of MG. She told me that I can pretty much tailor the dosage to how my body feels at the moment.

Dear Poetist,

I'm sorry you are going through this, too. It's even more difficult when there is the concern that race may play a part in getting a diagnosis. I'm thankful you had the one neurologist who has supported you, and there is another one who is stepping in now that the first neurologist is about to retire.

I have a hunch that, one day, there will be more tests to check on different variations of MG that we can't detect right now. Some of us who are sero-negative right now might show up as positive later. That's my guess. For the meantime, we need some brave doctors like you found, and like I've been fortunate to find, too. Please hang in there and take good care of yourself! I hope Winic1 is doing okay, the one who started this thread. I send good wishes.

Take care,
Erin

No, not race, as I'm white. Something worse--I'm female.
And you know how we are overly sensitive and delicate and subject to our overwrought sensibilities and suffer from things like The Vapors.
You know how many times I was told to go take a walk, I'd feel better?
Well, that's the problem, doc, I don't. I don't feel better. I feel like collapsing. I can't breathe. I can't make it up the three steps into the house after a walk.
One doc who told me that, I asked him, well, if I go up a flight of stairs twice a day, every day, will it get easier? He said yes. I said, well, I've been doing that 5 days a week for a year and a half already, as my son's classroom is on the second floor and I have to deliver him and pick him up every day, and it still isn't any easier. It's worse. So what's wrong?
He changed the subject and wouldn't answer and wouldn't address it.

Us women. We're so difficult to deal with.

I think you're right, when they know what to test for, there will be fewer "seronegative" victims of this.

Still have my "miracle pills". Don't know if the doctor has decided she can officially call it MG for me yet. CT scan shows no thymoma, AChR test was negative. MuSK test is stalled by insurance hell, I have someone inside the company working on it, I expect that, if it ever gets approved, it'll be 2018 or 2019 by then.

Seeing a neuromuscular specialist at Yale next month, on request/referral from current neurologist. Have been to specialists at Yale in the past, for other problems. Not impressed, at all, with Yale. In fact, I believe I saw a neurologist there, for this, a few years ago (think he was with Yale, but not entirely sure, was in New Haven, tho) who started by promising me that he would figure out what was wrong, wouldn't just pass me off like so many before, then immediately passed me off to a Yale-associated Neuro-Ophthalmologist, big reputation, who was basically senile and spent the entire exam yelling at members of his office about me getting signed up for their patient portal (after interrupting the exam 5 times to call and yell at people about it, I still never got signed up) and yelling at me whenever I answered him because I didn't say, word for word, the exact same thing I'd written on the 8, yes EIGHT, pages of paperwork I'd had to fill in before going. They're just running on past reputation, at this point. But, maybe this new guy is worth something, time will tell.

Meanwhile, I still have my miracle pills, and I am using just 1/4 pill every three-four hours or so most of the time, 1/2 pill if I want to take a walk with the dog or am going to do something more strenuous, and am hoarding the extra pills I don't use (have prescription for 3 per day) against my fear that they will say, No blood test-No MG and take them away from me. Asked our little small-town pharmacist for extra moisture-oxygen absorbing capsules to put in the bottles to make sure they don't go bad. Pretty sad state of affairs when a patient has to hoard their medicine against the possibility that a doctor will rank a lab result higher than the patients successful response to it.

Hi winic1,

At least with me, my doctors have told me that Mestinon is a pretty safe drug. If it is really helping me, which they can clearly see, they are comfortable prescribing it for me even without the formal diagnosis of MG. Some other drugs which are used to treat MG, like prednisone, Imuran, or Cellcept, are much more complicated. Taking them can have benefits for you, but they also have concerns for patients long-term, and doctors usually have more issues with prescribing them. I would be willing to bet that your doctors will not take away the Mestinon since you are doing so much better when you take it.

I want to wish you well with the visit to see the doctor at Yale. I have seen doctors locally at university hospitals in California. Sometimes those visits have gone really well! Sometimes they haven't. I know you've had some really difficult experiences with doctors, but I'd encourage you to look at each visit as starting with a clean slate, if you can. Even if the last doctor(s) you saw at Yale were not so great, this new doctor might be totally different. This doctor might be kind, helpful, and could be a great part of your treatment team. You might be surprised! You have more information to give them now, too. You can tell them that Mestinon really helps you, and that is very useful information to have. Thinking of you and sending caring thoughts.

Take care,
Erin from California

Ugh! Looked up the doctor I am going to see, in 10 days, at Yale.
He looks okay.

But....the neurologist who passed me off to the neuro-ophthalmologist is still there, and the senile neuro-ophthalmologist is STILL listed, so evidently he has not retired yet.

So, the records are still there (senile guy's report was more errors than not, absolutely everything in it, even basic stuff like 'I started wearing glasses when I was seven or eight years old, in third grade' and he wrote that I was in 8th grade and 13 years old). And the people themselves are still there.

Nobody around here will contradict a colleague.

(At our local hospital/doctor system, they are forbidden to do so. Officially. You are not even allowed to see another doctor in the same department for a second opinion, they won't let you have the appointment. You have to bring in a documented diagnosis from an outside doctor before you can see a different local one, and be treated differently than the first one said. )

Yale is not owned by the same corporation as the three hospitals in my end of the state, but things are generally very similar in the area.

Have a growing feeling of dread that this is going to be a complete waste of my time and the day off from work my husband is taking to get me there.
Damn.

Bear with me, winic1. I would like you to really hear what I'm saying. I'm not putting you down, but trying to help you out.

You began with a prejudice of your own. There are no good doctors around here. Maybe there are! Maybe you just haven't met one yet. Give them a chance.

Maybe the new doctor will treat you poorly, maybe not. What makes the difference? YOU!!!

Be calm. Try not to be combative at all (no offense). Write down your symptoms. Write down when you first had glasses. Having anything in black and white makes for an official document. Treat the doctor with respect. Heck, even compliment them (aka their ego). Don't talk over them. Ask for time to tell them how your body is doing (not how you feel, for that has nothing to do with medical facts). Stick to the facts. Tell them how whatever is going on is adversely affecting your life, what you are able/unable to do during the day/week.

And don't say that you have MG!!! I know, sounds silly. Allow the doctor to be the authority (since most can't handle a patient knowing something before they do).

And if they end up being someone who isn't nice, well, you can't change anyone's personality. But what you can do is ask them what disease is fatigable and responds to Mestinon other than MG, CMS, or LEMS!

Let the past stay in the past. Don't argue over any of it. Pretend none of it even happened!!! I'm serious. Try to be very reasoned and matter-of-fact. And men often see tears as weakness. Stupid, I know. Then neuros think that we are just basket cases instead of living through true physical suffering!

I have been through more than most when it comes to egos of neurologists. It is truly amazing how they so quickly interject mood or feelings or other nonsense into a scientific discussion, especially with women (yes, some men, too).

To counter that, you can ask if they see ptosis. Can they feel the weakness in your limbs? Why would a drug meant only for someone with low acetylcholine work so well? A placebo effect won't keep someone from the hospital due to a MG crisis! Ask them what testing can be done. Bring up the MuSK, LRP4, etc. Ask for an action plan. Tell them that you'd rather not die from a lack of treatment. Say everything in a very kind way. You can always scream your head off after you leave the clinic! ;)

BTW, have you seen a pulmonologist to have an evaluation of breathing? If not, try to have that done. MIP and MEP are specific tests that show if there is a neuromuscular basis for poor breathing.

We all know how hard this is, especially when you run into egos, senility, stubbornness, and ineffective doctoring. So make this appointment count. Be the very best you can be, without making the doctor your enemy. I don't know you, so I have no idea how you are in an appt. All I can do is give you the best advice based upon my past experiences, which are extensive.

I WANT you to have a GREAT experience!!! And a diagnosis and treatment!

:grouphug:
Annie

I can add some other things that helped in my appointments. If you have ptosis, but it is intermittent, take some photos when your ptosis is occurring. Bring those photos with you to your appointment to show the doctor. Mine, for instance, tends to be more prominent in the evening as my muscles get weaker (or during a crisis), so they don't generally see it during an appointment. It has helped my doctors to see photos of my ptosis, so I bring the photos along if I meet a new doctor.

I make sure to bring along the copies of my respiratory tests, the MIP and MEP tests that Annie describes, along with any other records that could be helpful. Even if you've had records forwarded by your doctors, bring your own copies with you to be on the safe side. You may already know that, though.

Annie's post is very good. Try to think positively; this could be a very helpful doctor you're about to meet. I will be wishing you all the best.

Take care,
Erin

As soon as anyone in the office looks for me in the computer system, it will bring up the old records. So there are the reports from the old visits to his colleagues, one of whom is head of the overall department. If he reads them, I'm done before I even walk in. I wish the past could stay in the past. But computers make that an impossibility.

Senile doctor has the reputation of a God around here. Once he has made a declaration, no one will consider anything else. Because of the lawsuit we had going against the guy who smashed into us, I was not allowed (by my lawyer) to request corrections to his report. So there it all sits, waiting to be read on new doctor's computer. And senile doctor had eight pages of all the information on me in his hands, that's the paperwork they make you fill out before you go. But that doesn't get put into the computer. His report does. And no one will contradict a God while he is still on the payroll.

Just hoping new guy isn't a reader, hoping regular neurologist who referred me sent him enough info to make him set aside previous records if he does see them. Hoping he's seen senile guy at work, and knows that it's time to disregard anything he's said. Or I am done before I even walk in the door. It's happened before. And there's no use talking or presenting symptoms or anything if they've already decided based on past history.

The worst part is not that he won't do anything. The worst part is that it means a wasted vacation day for my husband (we don't go on vacations, we use the days up for medical stuff like this, and usually run out). And the long drive. And the stress of finding our way in a city (I can deal with skunks, raccoons, coyotes, no problem. Not cities.) All that, and to end up done before I walk in. I just hope he doesn't read.

With all respect, thoughts do manifest reality.

Yes, I understand what you are up against. However, you do have power over how this appt. goes. They are not all robo-doctors. Some doctors do, in fact, have the authority and courage to speak for themselves.

The alternative is to just give up. That's not acceptable either.

Do what you can do. You do have the power to not talk about the past, which is what I said. Yes, the past is in the computer. Ignore it. Start over.

If you have already decided that it will be a complete waste of time, then it probably will be. I hope that it isn't.

:grouphug:
Annie

If thoughts really did manifest reality, my life would be SO much different than it is.

I imagine it is very hard to imagine the upcoming medical appointment going well, when you are returning to the same clinic where you had difficult experiences. I believe it is very possible you could have a much more positive experience, winic1.

Just last week, I returned to the university hospital clinic where I was seen 25 years ago. My local doctors asked me to return for a new problem. Many years ago, I'd been seen by the head of the department, who is a nationally-recognized expert in his field. He was technically excellent, but a very difficult person. At times he unfairly insulted me and yelled at me, as well as other patients. He also constantly yelled at the other staff and doctors. The records from those days are still there, but that doctor has moved to a teaching hospital elsewhere. I didn't know how the appointment this week would go, but I hoped things would go well. The answer is that everything went beautifully. I knew the doctor I saw, because he'd been on staff before. He was extremely kind and eager to help. In fact, he bent over backwards, trying to do all he could to help me feel better.

I'm sharing this story to point out that two doctors in the same department really can have different approaches to their work. The doctor I saw yesterday was not afraid to challenge the senior doctor 25 years ago, for one thing; I was there when they were discussing my treatment and surgeries. I don't know if any of this will help you feel more at ease for your appointment, but to whatever extent it is possible, please try to see this visit as a good opportunity. I hope this new doctor will help provide better diagnosis and treatment for you.

Take care,
Erin

Beautifully written, Erin.

winic1, This isn't New Age nonsense. Please bear with me.

I've been meditating for decades. Unlike many neurologists, I have worked very hard to remove ego from myself (unless ego is useful). I center my day around love, for everyone's sake. Each day, I have a lot of synchronicities. Some people see synchs as looking at the clock and seeing 11:11 or other repetitive number combinations. Yes, that can happen. That can also involve saying a word at the same time a word is said in a show. Those kinds of synchs started happening so much years ago that I hardly watch TV! My family and friends have witnessed that and their shocked reaction is priceless. All those synchs mean is that I am becoming more connected to the universe, listening to it, interacting with it, appreciating it. Not an easy thing to do, especially when so many fairly horrible things have happened to me in my life.

A few weeks ago, the topic of hard-boiled eggs came up with my mom. Throughout the next day, I couldn't stop thinking about eggs. I love them but can't eat them. I had put in an order the day before for a grocery delivery. As I was pulling the food out of the bags, and putting perishables in the fridge, I found an item at the bottom of a bag that I had not ordered. There was a container of 12 organic eggs!!! Kid you not. The universe didn't give me what I truly wanted or could have, but a view of what was possible.

What I meant by thoughts manifesting reality is that what we think is truly powerful. That doesn't mean that what we think of or wish for transpires. The universe has a way of doing what it wants. But if we appreciate what we do have, and realize that we can't truly control our lives (yes, to a certain degree we can) or that of others, there is some magic within that. If we accept our reality, do our best, and love ourselves and others, I truly believe that life does become better. Although, not always in the way we want.

By reacting at the same level of hatred to those who are mean to us, we give them power. By reacting with love and kindness, we are neutralizing that hatred. We can only control our reactions to others. And to ourselves.

As far as how this relates to doctoring, I have found that when I take my ego out of the equation (even with doctors who have truly bad behaviors), and say things with sincerity like, "I'm sorry, are you having a bad day?" or "Is there more I could tell you that might help you figure this out?" the doctor responds in a different way than if I were to be upset.

What is behind being angry? Pain. What can we do to dissolve pain? Show someone more love. Yeah, even doctors need love. Doctors are often whipped into a frenzy of fear over lawsuits, losing their jobs, or not having a great reputation. And many of them are "left-brained" in their approach, which can translate to them being controlling. But they are human. What they might do is push that needy or caring side of themselves even deeper in order to be objective or more controlling with patients. But what ends up happening is that they go to the other extreme and act like brutes. I honestly believe that some doctors don't know how to be kind while being objective.

But we patients can't do anything about that. We can only present our symptoms, clearly explain how they impact our lives, ask for tests, or whatever else we need to do to receive care. And the more "neutral" we are, the better chance we will have of success.

Of course, there are times when nothing works. In those cases, we are usually up against a controlling personality who cannot admit they are wrong. CPs are essentially insecure. They cannot admit they are wrong or imperfect without falling apart! I'm serious. So look beyond that exterior of nastiness. There's usually a heap of fear and insecurity, which you can work with.

I love what Erin said. Doctors have surprised me, too. And I find that a true vulnerability and open communication with a doctor can make them feel more at ease. That reminds of politicians, who dig an even deeper hole the more combative they are, instead of sitting down and having a frank and open conversation.

All I can do is share with you what I know to be true. Only you can work through this very difficult situation you find yourself in. It is truly reprehensible how you have been treated. Doctors have taken an oath, but many seem to forget that harm isn't always removing the wrong diseased kidney. Their behaviors cause us harm as well. Their inability to diagnose and treat us quickly is very harmful. But, again, all we can do is deal with the harm and do what we can to move on and find better help.

I am sorry that you have experienced these difficult situations. But they are in the past. You might still be angry about them, but that anger is only hurting you more. I hope you can appreciate what I'm trying to say. I really want you to have the very best care going forward!

:grouphug:
Annie

Doesn't matter anyway. Being snowed out tomorrow morning.
Next available appointment is July.

Oh no...I'm so sorry to hear this winic1. Did you ask them if they have a cancellation list? Sometimes they can get you in sooner if they do.

This is so frustrating. Please keep taking good care of yourself, and I continue to send good thoughts your way.

Take care,
Erin

I'm sorry to hear that. Please go to an ER if you become worse.

Annie

All tests negative but had mg
 

I know a woman who for 25 years, EVERY test she had for myasthenia gravis was negative. Then they took out her thymus gland. She said it was spitting out antibodies. Proof positive that she had myasthenia gravis.

Same here
 

I had all the tests. I am dead on for 20 years every symptom it seems MG. but Thymus Gland is normal, Blood work is normal. Single Fiber EMG normal. The Neuro-Ophthalmologist I am seeing. Which is the head of Neuro-Ophtamology at Case Western Reserve University. He said it is a very tricky disease. He has not ruled it out yet, but I am still doing ok, and my symptoms are not severe enough to put me on any medications yet.

The Doctor that wrote some papers on finding the difficult cases of MG that I saw at the Cleveland Clinic, was very dismissive. Did no fatiguing tests. Said you can not have MG if you have CN4 Palsy, only did the instant neural deficiency tests. It takes 1-2 minutes of muscle testing before you see weakness. I can work out for a hour, and I no longer have reflexes for the next 6-8 hours. Next day I can go to the doctor, back to normal or hyper reflexes. Been that way for many years.

One thing that I am very greatful for is that went through another condition called MP which was very painful that they could not figure out for 15 years. I learned mindfulness meditation. They taught me at the Cleveland Clinic how to reset my brain in how medicine works and doctors. How anxiety, inflammation, and pain are one in the same. So now I do not let fear and pain hurt me. So not knowing, does not depress me, does not hurt me, does not make my chest tight, and make it difficult to breath. I do water aerobics 3 times a week to keep my strength up, to talk with people, keep my mind healthy, it keeps me relaxed, and my muscles moving. Whatever is wrong with me, it is wrong with me. There is not going to be a magic pill, if there is, I am not going to live my life looking for it. I am going to live my life. It drives me nuts, like I have a million things to do today, and why am I here. I forgive myself for going off on a tangent, and back to work.

Hang in there!

Rob.