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 taken from here:
http://neurotalk.psychcentral.com/thread173355.html
There is a lot written by Alice Md on the neurotalk forum for MG about seronegative myasthenia. The doctor has done extensive research on the topic & also suffers from it herself, but no longer writes on the forum.
Good luck on your journey,
Calmday
I am in the same proverbial boat with you along with Carla and others here who officially do not have a diagnoses as yet. What pushed me over the brink were two recent ER visits one of which resulted in two days in an ICU where partly due to not having an official diagnoses and not having a care plan I did not get the actual support I needed and actually coded.
IT made me realize that unless I see someone who eats drinks and breathes MG and has the guts to call this one way or the other I am going to be in continual purgatory. Pergutory is not just an inbetween place but is frought with dangers.
Unlike Dr. Alice who seems to have seronegative MUSK I have an extremely good and positive response to Mestinon. Being on it tho has made me a bit complacent up to now on pushing forward for a diagnoses.....but I have seen the hesitation on the faces of my current doctors to give opinions on important things due to my lack of a diagnoses in this area. Only I can take the steps to find the right person to analyze and hopefully guide me on this part of the journey.
I know that Eathon Lambert and MG can look a lot alike and there are also a couple more syndromes that are neural junction disorders. My responses to mestinon, and to other drugs that challenge acetylcholine are classic as our my symptoms. On the self assessment test where a score of 5 on improvement after medication is given is deemed positive I had a score iof 13. Few have that high an improvement but I did. So I got complacent after that imrovement....and have coasted along using mestinon but after the two ER visits this year in which my breathing was greatly affected and where I got no where near the help I needed I can no longer sit on the fence.
Next week we will board our dogs and travel by car across the state
oxygen bottles in tow. It will be 7 hours of driving so will stay in a hotel overnight before seeing this doctor who seems well versed in both MG and seronegative MG. He has written several papers on the subject and then some. Will hope he can listen and then guide me in this.
Of course there is some tredpidation. He is my 6th neurologist....but the first with this type of background.
There is no way he can not be of help to me.
Will give you all a full report on my return.....Hugs to all, Marie
Lorraine