NeuroTalk Support Groups - IVIG for CRPS.. those of you who've had it

Quote:

Originally Posted by poucho (Post 1216581)

Hi all,

Apologies for the super blank profile. I've been browsing for about a year, only just registered and of course, the pain is so crippling, I just don't have it in me to fill out a full profile at the moment.

Curious to hear from those who've had IVIG for CRPS/RSD. I am in the UK, pretty sure I just missed Dr Goebel's clinical trial for it here, but have read threads in the past here of people having received this treatment in the US.

I see the Ainsworth Institute in NYC offer IVIC infusions.

Any of you who've had any success with it care to share experiences/where they had it done?

For the intro I never made:
Female, 29, United Kingdom.
Former ballet dancer, CRPS in both feet and legs
Definitely out of stage I,probably not stage III, so just hovering somewhere in cold phase with recurrent flare-ups, barely able to walk, allodynia, and the usual crushing, aching nightmare that never freaking ends. :(

Thanks.

H! I just started using this site. I am having EXTREME cold pain in my vulva/clitoral area following the swelling and all that, that comes with initial crps. Yes I have crps in this area somehow and it's a nightmare. I am wondering if you have talked to the doctors at ainsworth (I am planning n going there) about ivigs effects on cold type crps. I know it works extremely well for people who do it in the acute phase but I haven't heard much on its effects of the severe cold feeling in later phases. I'm really concerned for my tissues and future. I'm 18. If you did the treatment or have talked to them about the likelihood of it helping cold crps please let me know what information you have. I really don't want to take a trip to NY if i dont need to. I also can't get my hopes up anymore. Thank you so much! You're really brave.