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Old 07-27-2016, 08:32 AM
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
JoannaP79 JoannaP79 is offline
Member
 
Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
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Quote:
Originally Posted by poucho View Post
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.
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.
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