MG Severity at diagnosis/Treatment success
 

Does anyone know if

there is a correlation between the severity of weakness/Stage of illness at the time of diagnosis and estimated time to get managed/personally adjust?


Is there a correlation between the severity of weakness/Stage of illness at the time of diagnosis and likelihood of remission?


of successful management of symptoms?


Does MG ultimately get worse with age for everyone? I know cant be cured but are their people who do just fine on the same amount of mestinon for the rest of the lives?

As far as I know there is no correlation between the severity of the symptoms at diagnosis and the chance for remission.
It is not unusual for a patient with crisis to fully respond to treatment and go into complete remission.

What does influence the chance for remission is how much time passed since the diagnosis till the beginning of treatment and also the type of MG that you have. MG is not one disease. There is AchR MG and MuSK MG and probably others not yet discovered. (several other antibodies have been found, but it is not clear yet if they can or can not cause MG-such as anti-ryanodine, anti-LRP4 etc. Those are also not tested routinely). AchR and MuSK are very different in many aspects.

MuSK MG is less likely to respond to treatment, AhcR is more likely to respond.

A significant proportion of AchR MG patients do well with a low dose of immunosupressive treatment or can even stop all treatment.

Most MuSK MG patients require higher doses of immunsupressive medications for prolonged periods, have more steroid induced myopathy and a less stable disease with many recurrent exacerbations.

Some patients with relatively mild forms of AchR MG can probably do well with mestinon alone.
Most patients with MuSK do not have a good response to mestinon, and require other medications.

Finally, some patients do not have autoimmune MG but a congenital abnormality of one of the proteins of the NMJ.

For those of us that are seronegative, is there any speculation out there that we may have a different antibody being produced?

Also, what about the congenital protein thing? Would this be present from childhood? Do you have any references?

I suppose that I am obsessive about obtaining new knowledge on this thing that is trying to take over my life. I am sure that we all want to know what our prognosis is.............

Does that imply that if someone begins treatment early on and the disease still spreads that they did not receive correct dosage/the right combination of medications?

Anacrusis

And another question to go with that one? If mestinon is only a short acting, symptomatic treatment, does it count?

My first blood work was Neg. The second said I was positive for binding (6 months later) My bloodwork a couple of months ago showed I was positive for 4 different antibodies. I have taken Imuran, Cellcept, 60mg and 180 time release Mestinon, Prednisone and bunches of IVIG. The only results I got was the 80mg of Prednisone that stopped my double vision.

Different antibody
 

I think MGFA website said yes different as yet unidentified antibodies but I also think it said only about 5% of cases - seems there are more seronegative patients in this group but that could be function of fact that we are seroneg making us more likely to be involved in the group.

For me this thing has already taken over my life (I have not been able to function as normal for at least 2 months now) but I am trying to be somewhat balanced and not be obsessive about reading about it. :-)

Stephanie

Follow-up ques
 

PindPongMan

If you dont mind sharing some personal information, may I ask...

what your stage on the chart/severity of symptons was at the time of the first blood test?

When in relation to the tests did you take the meds?

Was there any notable differences in your general condition when the test later showed positive?

Sorry if my questions seem to be interrogation, I am a litigator and hard for me to turn that off. Thanks - if my questions are too personal, I understand completely.

Stephanie

I personally believe that there is a significant number of seronegative MG patients who are not diagnosed as MG (and therefore are not part of the statistics).

When you assume that a certain combination of tests virtually rules out a certain diagnosis (when in fact the sensitivity of those tests is unknown), there is no way you can know how many patients truly suffer from the given illness.

Possibly you are right that seronegative (as opposed to seropositive) are over-represented in internet forums, but at the same time those who are less proactive and told they are suffering from psychiatric problems, or other " waste-basket diagnoses" (when in fact they have MG) are under-represented.

It is very hard to know what is the true number of neglected MG patients.
I have been trying to find this out over the last few years, without much success.

The patients we are seeing on those forums may the proactive edge of a very large ice-berg. The neruology community is overall very narrow minded and easily dismisses patients with myasthenic symptoms who do not fit the book.
Some of those patients may eventually (years later) be diagnosed as suffering from myasthenia, and probably many are not.

Proposal
 

AliceMD do you ever sleep? :)

You are in better position than I to assess but my experience with neuro resident at UM hospital made me think it may be more of time or productivity demand issue than narrow minded, at least when they are first starting to practice. At intake in the hospital ER, i was quite impressed with how thorough resident was but once the actual neurologist (who I did think was narrow minded, dismissive and condescending) saw me she was not the same.
After the emg test she actually told me I should think it was great news that blood and emg were negative which clearly showed me she didn't get it at all!!
Hearing that I lost all confidence in her desire, ability to help me.

I have been fortunate enough to find a neurologist who is the chair at medical school and was thinking I might suggest i could volunteer to work on thesis/project with
Neuro students to address this type of issue. Any suggestions for study, project, thesis would be greatly appreciated.

Also I was accountant before lawyer and although my typing skills on iPad are not so great, I am great at compiling information into presentable reports. Perhaps we could do some sort of survey of neuro's to compile info the could be useful?