Originally Posted by alice md

Steph,

You address a point which has concerned me as a physician regarding the pros and cons of internet support groups.

I think that internet support groups are mostly based on information (and sometimes disinformation).
When you are ill, it is not always beneficial to have all the information (some which may never be relevant for you).
When a physician gives you information about your illness, while seeing you, seeing your facial expression and the way you react, he/she can filter it in a way which will be appropriate for the stage you are in.
When you read it on the internet, there is no one to filter it for you.

I have to admit, that based on my experiences, I have a certain agenda regarding this illness. I want to increase the awareness of physicians to less typical and hard to diagnose variants. And at the same time educate patients not to accept unreasonable explanations.

But, reading your post, I realized that this may not be the right thing for patients who have "by the book" MG (which is the majority of the patients).

So, let me put things in proportion.
Most MG patients will have AchR MG which is very easy to diagnose.
Most neurologists taking care of MG patients have a very good experience with AchR MG and know how to manage this illness.
Most patients with AchR MG will respond very well to treatment and will be able to lead a normal or near-normal life.
Most patients with AchR MG will not require high dose of medications for significant periods.

Probably about 50% of the patients with no detectable AchR antibodies do have AchR MG (and their antibodies can be detected by a more sophisticated test developed in Oxford). Those patients will have the same clinical course and the same response to treatment as any other AchR MG patient.

The remaining 5-10% will either have MuSK MG, or truly seronegative MG (which means that they could have other, not yet recognized, antibodies, or rarely a congenital form of this illness).

This group of patients poses a significant diagnostic and management problem. And quite a few of them fall between the cracks.
As they are only a small percentage of the patients, it is quite easy to dismiss and ignore them or to try and lump them together with the more common MG variants. It is also possible that their number is more than we think, as many of them are not included in the MG statistics, as they are not seen as MG patients.

This does not change the fact that most patients who are diagnosed with MG and given treatment will do well. There is always place for improvement and it would have been good if there was research into finding more effective treatments with less potential side-effects. But, this is true for many other diseases.