What are people's thoughts on gathering all the info I can on ivig use for sfn and posting it to my neuro? He sees me then fobs me off for 6 months saying he is looking into ivig for me. He really doesn't grasp the intensity of my full body sfn and its apparent now that he just isn't looking into it at all.


My next appointment with my neuro is March. Im seeing another new guy privately in January.

The reason I ask you your thoughts is because I am so conscious of the sensibilities of some of these consultants. As most will know, it's a balancing act of being assertive and pro active in dealing with them but annoy them too much and pay the consequences. I feel they could totally block you and make any further investigatory tests or treatments impossible if they feel they are being patronised or told how to do their job. Any thoughts?

Happy burn free Christmas everyone :-)

If this is a doctor who knows you well, really wants to help you and ready to invest a lot of time and efforts, than yes, giving him some papers might help. I know very few such doctors..
Otherwise, in my opinion it won’t work. If he wanted to help, he could easily find the papers by himself, or refer you to a relevant colleague…

Take into account that it takes a lot of time to read the papers, learn the subject and deal with the IVIG request, especially if he doesn’t have previous experience with it.
And even if you get a recommendation for IVIG from him and it would be approved, can you count on his help and experience during this treatment ?

Sorry...

I don't know that it would hurt if you provided him with some written information. I wouldn't overwhelm him. Understand it's his choice if he reads it. He'll definitely get that you're motivated. I say it depends on your delivery. Also try not to have expectations about the results.

Happy burn free Christmas to you!