Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
This article I have taken from a website written by a MD who is seronegatve.
All the tests were normal with the possible exception of that I might be a bit crazy.
This only proves that you are a normal human being and also increases the likelihood that you have MG. (according to the Modified Alice criteria-see below).
There is a saying that if one person tells you that you are drunk, you can ignore it, but if 10 people do, then you are probably drunk.
This is absolutely non-applicable to sero-negative MG. Hope it is helpful.
No matter how many people (including leading experts) tell you that you do not have MG, you can still have MG.
( I have personally learned that the hard way).
I haven't done a study on that, but I don't think there is any seronegative MG patient that was not told at least once (or possibly numerous times) that he/she have nothing physically wrong with them and only suffer from some ill-defined emotional problems. (or at the most may have very mild/ocular MG).
I use the modified Alice criteria for diagnosing normal tests-seronegative MG:
1. fluctuating muscle weakness.
2. normal test results (including antibodies, SFEMG done by an experienced EMGist)
3. symptoms which are clinically suggestive of MG (or else those tests would not have been done)
4. variable response to mestinon (anything from improvement to worsening or even unpredictable response).
5. no other reasonable alternative diagnosis. (this requires that you have been seen by an MG expert).
5. Some kind of ridiculous psychiatric diagnosis (eg-preocupation with symptoms that effect every aspect of your life, "anxiety" when you have difficulty breathing, "depression" when you have to come to terms with being unable to do what you could easily do before etc.).
6. Abnormal tests which show of some form of muscle weakness but are considered as "false", nonspecific, could be in the normal population etc.
The more criteria you have, the higher your likelihood of having seronegative MG. Having all 6 is a near-definite diagnosis.
Note: I haven't yet done any validation studies on my diagnostic criteria, so please be aware that they may possibly be wrong.
As the medical community has not yet accepted this entity (normal tests seronegative MG) it is always better if your illness is diagnosed as diagnostic SFEMG seronegative MG. Makes life easier for everyone.
All the tests were normal with the possible exception of that I might be a bit crazy.
This only proves that you are a normal human being and also increases the likelihood that you have MG. (according to the Modified Alice criteria-see below).
There is a saying that if one person tells you that you are drunk, you can ignore it, but if 10 people do, then you are probably drunk.
This is absolutely non-applicable to sero-negative MG. Hope it is helpful.
No matter how many people (including leading experts) tell you that you do not have MG, you can still have MG.
( I have personally learned that the hard way).
I haven't done a study on that, but I don't think there is any seronegative MG patient that was not told at least once (or possibly numerous times) that he/she have nothing physically wrong with them and only suffer from some ill-defined emotional problems. (or at the most may have very mild/ocular MG).
I use the modified Alice criteria for diagnosing normal tests-seronegative MG:
1. fluctuating muscle weakness.
2. normal test results (including antibodies, SFEMG done by an experienced EMGist)
3. symptoms which are clinically suggestive of MG (or else those tests would not have been done)
4. variable response to mestinon (anything from improvement to worsening or even unpredictable response).
5. no other reasonable alternative diagnosis. (this requires that you have been seen by an MG expert).
5. Some kind of ridiculous psychiatric diagnosis (eg-preocupation with symptoms that effect every aspect of your life, "anxiety" when you have difficulty breathing, "depression" when you have to come to terms with being unable to do what you could easily do before etc.).
6. Abnormal tests which show of some form of muscle weakness but are considered as "false", nonspecific, could be in the normal population etc.
The more criteria you have, the higher your likelihood of having seronegative MG. Having all 6 is a near-definite diagnosis.
Note: I haven't yet done any validation studies on my diagnostic criteria, so please be aware that they may possibly be wrong.
As the medical community has not yet accepted this entity (normal tests seronegative MG) it is always better if your illness is diagnosed as diagnostic SFEMG seronegative MG. Makes life easier for everyone.
It is people like you who are still pushing for a diagnosis that will led those seronegative MG suffers getting further acknowledgement and acceptance by our medical fraternity. I hope that's not too far away for you.
Keep up the fight!!
Gez
My life has changed so much during the last months that if I don't get a better treatment ,I truly don't know what will happen. I guess going back to the hospital to face the lack of knowledge of those who are supposed to take care of me.
Sorry just venting, today is not a good day, I woke up having breathing issues, my right eye is almost closed, having problems walking and swallowing, but I guess, all of this might just be in my mind ;)
Marcela
I am so glad to have found my neuromuscular specialist. He did exactly what she said in number 5 and ruled out all other reasonable alternative diagnoses.
Cathi
Remember we do get better.
Ann
I do hope that you are able to get some ANSWERS somewhere, somehow!!! And... by the way... your icon is ADORABLE!!! Especially the little breathing tummy inside the bathing suit!!!
Rosie (catching up on DS)
I thought I was going to Switzerland and now it almost seems I am going to France. I DON'T WANT TO GO TO FRANCE! I am going to throw a huge fit and hold my breath and go to the middle of the street and swear at the top of my lungs. I am going to throw things and break them.
I am going to run away, drink booze til I am drunk and even try smoking for the first time since I tried it as a teenager. I AM GOING TO STOMP MY FEET!
Well actually I am not, but I wish that I could. I am mad at those chicken doctors who don't want to stick their neck out even one inch.
I have seen quite a few doctors these last seven years, plus having babies and taking 13 kids to the doctor, and I have never sued one or even considered it.
I know they are not perfect, but the longer they wait, the more exausted I get and if it is MS, the more damage is being done. I also remembered that the "Idiot Nuerologist" that I thought was a dumb twerp!
I remembered that when he was looking at my MRI taken last November because of somekind of seizure, he did say at one point, kind of himhawed around and said, no I don't see anything irregular on here, but maybe that little.......no.......well.......no I don't see anything.
Well, obviously he saw something because I could see what he was talking about. The problem is that when there is an injury I think it can mask alot of other things, and it is easy to attribute symptoms to that instead of something else. Sorry VENTING. lol love you all, carla
Love,
Rosie
Lorraine
lol I am really fine. Just wishing I could throw a fit at the doctors and get my way. I remember back 7 years when I had my husband take me to the ER. I don't even know why exactly. I just knew that something in my head was not right. They did an MRI.
They said they found nothing, but an empty cela. Which is where your pituitary gland sits, in this little cavernous place. But when spinal fluid leaks into there it puts pressure on the gland and causes it to shrink and many times just dissapear.
But that wouldn't cause any symptoms and doesn't hurt anything. It is a benign condition.
Well, then how did they find it. It was and has caused me other health problems, I am sure of it. I read on it the other day and it said that it is responsible for nuerological problems and associated with depression.
If they had done something 7 years ago, with drug therapy or whatever they do, maybe my Thyroid would function, and my Thymus wouldn't possibly be going crazy and other things.
Could my health be better had they listened back then? I feel that same frustration now only more, because of the time and the strenghth that I have lost. I am so sad for the ones here that are not getting any credence to their complaints.
I do not see this happening with other illnesses. Not MS, really not any other thing that I know of. There is no test for bipolar, but yet I am absolutely pumped full of meds, I mean toxic meds. Lithium for instance.
No controlled substances, but they will destroy my kidneys and liver at some point. But the doctor told me two days ago that she can't treat me for something that she is not sure I have because the meds are so toxic. Really? Really?
They don't worry about the other meds. I would be interested to know how many people who doctors hesitate to diagnose with this have been treated for any mental illness, any. I just feel that they are descriminating against me.
I can tell as soon as they start to talk to me if they have my medical history. They without fail, except for one doctor have treated me with suspician. And some just like Lorraine, they just blatently treat me as if I am stupid or worse a liar.
If any of them had to honestly deal with what I have dealt with as far as mental illness goes, I wonder how honest they would be, and yet I am fully open and honest with them. I think they assume the worst of others because that is what they would do.
It is wrong, and if I ended up having something happen, I would hope that the ones on this site would be able to use that example to wake the medical community up about this disease.
If I have MS and they can see it, then I will go on from there. I love my doctors that listen to me. They treat me as their friend and know that I will treat them as a friend also, but if a parent wants a child to do something, honey will get more bee's than vinegar!!!
Lorraine, Rosie, Restore and anyone that I have forgotten. I am so sorry. I hope they listen to you. I know nothing about any of your histories and don't mean to imply anything. I just see people being treated so differently and am trying to find out why.
I hope I didn't upset anyone, I am not really upset. Just letting it out on paper. I am fine, really. I should make sure that people know I am half joking. love carla I said half!!
When do you open your clinic?
(You could get plenty of sympathetic partners, right here.)
You know these cruise-ships, that do ''theme cruises''?
(''music of the '50s'' - that kind of thing.)
Well, we could travel the world, continent to continent.
Using the ''Modified-Alice Method-of-Diagnosis''!
Might even allow a few MG Specalists aboard.
They might even like it!
- Ross
I shall welcome that ---opening my clinc using my credentials and I shall even invite the eccentric neuro who screwd up his face when talking and told me I have "Superwoman Syndrome'.
I shall call the clinic 'superwoman' and have the staff dressed in Superwoman clothes.Sorry I am getting a bit carried away here.