Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-27-2016, 04:01 PM #11
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Originally Posted by abigailsophiex View Post
Thank you!

Yeah I was diagnosed late (not as late as you though) at 7 months from onset and then again at 1 year and 2 months. Ive waited 18 months to start treatment though which isn't fun when you're only 20 and paralysed as a result

I have heard that about the blocks too, they say its a safe procedure but there are so many risks associated with it! xx
They always say it's safe because for them it's just a routine procedure; but you have to live with the consequences. I got the standard Belgian treatment which is calcitonin & bisphosphonates (for late stage). Well, it was all too late anyway.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 10-03-2016, 01:10 AM #12
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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.
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