Quote:
Originally Posted by en bloc
I wasn't thinking Dr. Birnbaum would try to "persuade" her doctors to use IVIG...never crossed my mind. He likely knows the limitations of the NHS funds for treatments and that they don't allow it. They certainly may discuss the treatment in general, but Dr. Birnbaum has used many biologics (different types of immune suppression drugs) and may have something else to offer her doctor as an option. Dr. Birnbaum does mostly research (only sees patients ONE day a week)...and therefore has knowledge on anything new...and experience on older treatments that may not be used as often now (but might be good in her case with the AS).
It is quite common nowadays for doctors to phone consult with other physicians...even in other countries. Of course, they cannot talk to patients directly, but the consults are between the physicians...on a professional level.
|
Well I really hope that this works out somehow for her and maybe, selfishly, I too might benefit. Also I’ve just learned from someone that Addenbrookes Hospital in Cambridge - are looking for people with autoimmune neurological problems to trial IViG on I think. I will message Joanna about this. It’s too far away for me to benefit from but I plan to tell my neurologist about all this on Wednesday and hope she doesn’t do what everyone else has done so far and look at me with total disbelief and poo poo the idea.
flatly. It’s clearly all about money and us not being a priority. If they concede that IViG or Biologics might help us then that’s a very expensive concession so it’s easier for them to lie and say there’s no evidence that it will work and make me feel like a numpty for even suggesting it as a possibility for treating SFN!