Hi all, boy, it's so hard to read 'bout the responses you are getting from the neuro "specialists".....just saw my neuro for check-up again, & he is STILL uncomfortable with my dx of MG....all the antibody tests are negative, & I told him that many of you are also seronegative but still are diagnosed with MG...the only criterion I have is a decremental EMG, & he still hesitates...whatever else would cause this??? & my clinical signs are positive, but they never see that...app'ts are always in the A.M. & even if I don't take the Mestinon, he doesn't see it, & without bulbar signs he's not convinced...I sure wish there was a better way to clarify things, maybe another decade or so....sooo frustrating...guess at my age I should be grateful to be somewhat functional, but I sure do miss my vocation & my horses...(wonder if a muscle biopsy would elucidate anything?)

Dottie

When I had my EMG and the other electrical stimulus test (I forgot the name just now) the doctor asked where I was the weakest. At the time it was my right hand and left side of my face. My right hand and left side of my face were tested. Made sense to me.

Maybe you should talk to the doctor performing these tests about your concerns. It makes sense to test the weak muscles since we all have different muscles that get weak due to MG. What point is there in testing a muscle that works fine?

I just gained understanding as to why my doctor waited until after these tests to prescribe Mestinon to me. I don't know if I could stop taking Mestinon to "prepare" for a test at this point. Mestinon is such a life saver and I would be afraid to stop taking it.

I hope your test goes well.

DOTTIE!!!! You are in Shiloh!!!! Where is your neuro?? Memphis, Jackson, or Nashville. We need to TALK!!!

Jana, I'm seeing neuro in Jackson...please yes, let's talk, do need the help...thanks..sent you a pm..

Well, Dottie, all I can say is how can he not see the obvious?

I think doctors are afraid of committing to a disease and then being wrong. It leaves them open for a misdiagnosis and resulting lawsuit. Stupid excuse for treating a patient poorly.

Annie

Does not the Hippocratic Oath say something like "first do no harm'.

Are not our Drs who are too woosy to diagnose us - "doing us harm". I am tired and I am angry. The next appt with the Neuro I am going to push the boundaries....

I was on steroids when I had my EMG last year. The first Neuro I saw took great care to prove me healthy. The second Neuro did not even spend 5 minutes in the room with me. I was never told that steroids could influence the result until a few months ago by another Specialist. I cannot come off the steroids - so what happens now ?

Do I go through a pantomine for this third Neuro ? And when I get a negative result ( as it will be ) what will this prove ?

I love your term 'frequent flyer', Rach ! That so suits us ... not that we want it that way.

Yes but it say specificly say to whom it is to "first do no harm" to, us or themselves(oops sorry there's my sarcasm rearing its ugly head again, I might get into trouble soon!!)

in fact it is not either-or, as once you mange to truly follow this dictum and be there for your patient, admitting your (and your profession's) abilities and dissabilities, and becoming true partners in fighting disease, then there are very few things that can lead to such a feeling of satisfaction.

this is from a book about Hippocrates -

Medicine must try to preserve or restore the supreme good and divine: health. "Health, the most venerable of the blessed divinities, would that I might pass the rest of my life with thee! … if there is in fact, any charm in wealth , or in children, or in the royal power that makes man equal to a god…that everything flourishes, that the company of the graces shine; but without thee, there is no happiness."
The lofty ideals of the Hippocratic treatise are altogether exemplary; and on the relationship between the physician and the patient, their humanity is also quite exceptional. And so it is not surprising that, having first made a deep impression upon contemporaries, they should have become the bible of the physician over the succeeding centuries. In our days, despite progress of medical sciences, which has once and for all turned its back on Hippocrates, they still possess a freshness… they offer rich grounds for reflection for anyone who wishes to become acquainted with the earliest roots of humanism.
The Hippocratic message concerning the foundation on which rest the relations between physician and patient may be summed up in a famous maxim: "as to disease, make a habit of two things- to help, or at least do no harm." Here Hippocrates clearly asserts that the purpose of medicine is to protect the interests of the patient. But the physician's unique point of view serves to lend nuance to what was to become a more dogmatic position with the philosophers. Because the injunction to "do good" represents an ideal that the physician cannot always attain, he adds "or at least do no harm" failing to be useful, the physician must not worsen a patient's condition through an untimely intervention.

The dialogue between the physician and the patient:
… The originality of the Hippocratic manner of speaking lay elsewhere. It consisted in initiating a dialogue with the patient for the purpose of collecting information about the diagnosis or prognosis of the illness, or the course of treatment… to know how to question a patient was indispensable, but it was also necessary to know how to listen…the patient's response served as a guide for the physician in the course of treatment-but only on the condition that the physician knew how to interpret it. Where he did, an attentive dialogue came to be established that marked the beginning of authentic partnership between physician and patient in fighting illness. "The art had three factors, the disease, the patient and the physician. The physician is the servant of the art. The patient must co-operate with the physician in combating the disease."

alice

Rach,

I hope that you get some answers during your next appointment with your neuro.. I wish you lots of luck, and I wish the neurologists you see a full head of marbles (as in, they make the correct diagnosis)!

I just wanted to comment on a couple of things. During an MG conference, the experts said that one of the reasons doctors are so hesitant about giving an MG diagnosis with out any black & white results, is because the meds that are prescribed are very serious, and can be life threatening. So they don't want to put someone on, say prednisone which can be very difficult to get off, or wean down. And some people end up having to be on it for the rest of their life because their adrenals don't want to wake back up. Kidney damage from some of the immuno suppresants can cause kidney damage. And once that happens, the kidneys don't re-heal themselves. It's permanant. IVIG can damage the kidneys. There are just so many health problems that can be created from some of these meds.
Call your neuro, and ask them if they would like you to wear yourself out, so they can test during a weaken state. My neuros always wanted to test me during the weak periods, and even put me through the mill before the Tensilon test. So give a call, and ask them. They'll be able to help you.
If you are in a weakened state, and have the emg, chances are it will show up easier than when you're well rested.
Best of wishes
Love Lizzie