Quote:
Originally Posted by poucho
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.
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Hi Poucho,
I don't have crps I don't think. I do have widespread small fibre nerve destruction/ damage. Getting ivig is really tough on the UK. I only managed to try it privately through insurance in had with previous employer.
Do you have a good neurologist? Makes all the difference in the world. I ended up going to Queens Square, London in the end to finally be taken seriously.