[Hi Brambledog,
Thankyou for your very helpful reply,
My heart goes out to you and all other members,who face the challenges we do on a daily basis.
You raise some very valid points.
How interesting that you have some things in common with me.
Do you have any idea where i might find the protocols to guide my doctors.
You are so right if i had someone to asess the risk and reassure me then i would want to go ahead with investigations.
Ive been doing what you surgest but with no result so far!
I have looked at both Bath and Edinbough centres for research,but so far not got much help from them.
Any surgestions where i might look?
NHS is not much help,ive looked on their websites and cant find anything of use.
Do you know of any neurolagist who is good that you may have used who i could see?
Or does anyone out there in the UK know any neurolagist who could advise me of the level of risk involved in having a sedation in my foot and biopsey/endoscopy?Who could enpower me to make my decision.
Has anyone found a good consultant to talk to in the UK prefably in Scotland.

Many heartfelt thanks to everyone
I cant tell you how wonderful it is to have emotional support!
Gentle Hug to you all
Flora99
X



QUOTE=Brambledog;1019438]Hi Flora welcome to the site, but sorry you have so much to deal with. It's hard to know which way to turn with so much going on and a million questions and concerns....

I have CRPS in my whole left side, and my spread (from my left knee after an arthroscopy) has happened with no assistance at all. Equally I know of people who have had spread following other issues/injuries.....we are all different and our CRPS acts and reacts differently. You have to bear that in mind when reading our opinions!!

I feel we have a few parallels - and not just because we're both in the UK. I had stomach problems from anti-inflammatories (I also have coeliac disease), and had an endoscopy. The endoscopy was pre-CRPS, and I would be nervous about having one now as well. But I think it all depends on the risk to result ratio. With something as serious as cancer (a big fear for me due to family history, but I won't go into that here) I think you always want any reassurance going. I took amitriptyline and didn't get on with it, the side-effects wore me down and I didn't get much effect from it after a while. I'm not sure how it could protect you TBH. I had bad stomach problems again with gabapentin, and at the moment take low dose Lyrica, which does more than anything else has so far! Sounds like you could maybe do with discussing other med possibilities with your docs, and maybe seeing a physiatrist (who considers your whole body and not just one bit).

Your own docs might not be aware of every bit of info about CRPS - goodness knows there enough of them who don't know a thing - so its a good idea to make sure they have as much guidance as possible. Might be worth printing off the relevant sheets on surgery/hospital protocol from RSDSA or another good site and giving them to your docs, and discussing how they plan to approach the risks. Then you can decide for yourself how best to do things. Chances are that if you feel reassured that they understand your CRPS, are aware of the risks and doing everything they can to minimise them, then you will want to go ahead with the procedure. My own feeling is that I would worry about what was going on in my body, and the anxiety would affect my symptoms and quality of life anyway. If it could be done reasonably safely, I think I would want to know. But that's me

Only you can decide on something so important, but I know it's hard to even get up some days, let alone argue, discuss and make decisions... So I admire your desire to learn as much as you can despite all of this.

Really really good luck with everything. I hope your doctors do the right thing by you and things go well, no matter what you decide.

Bram.[/QUOTE]