Andrea,
I never had balance problems until the RSD. I can't walk at anytime without
losing my balance. I've had a problem with my leg since birth and never experienced the problems I have now. My leg also goes where ever it wants to. I have no control of it at all. I now have to use cruthches so that I don't fall anymore. I am not a Dr. but I really belive that the balance/coordination issues are from the RSD. Iam so sorry for Alison's problems. Please wish her well for me.

Sue K

Hi

I am from the UK. Has anyone suggested splinting and epidural for the leg? or a knee brace? how does she find walking in the physio pool? or a caliper. Also if she is having such difficulty it might be worth using a standing frame for a bit - as I know there is some sort of research that until the leg gets used to bearing weight again the spasms will make the leg jump - haven't said that right but that's the basics. The balance thing makes sense to me... I first lost the balance with my legs and they would go from beneath me and now have no balance.

There are a couple of things that might help - for instace CBT might reduce some of the tension, what dose of baclofen is she on? I'm on 110 and it makes some difference. How about trihexyphenidryl? diazipam? temazepan? clonazepan? botox? meptazinol (pain killer), buprenophine? nortriptylene? HBOT? working with someone on pain/ stress relief - eg a pain psychologist who can help with meditation etc. Reiki? Eastern Medicine? (odd but that guy was the first guy to be able to move my knee at all), TENS, EMS,

I don't know what has been tried.

Are you on SKIPS? more of the parents might have ideas there.

Is Ali under a neurologist for the dystonia? something like sinnimet plus might help.

Ok that's all off the top of my head - but feel free to PM me if you want to ask more. Since my diagnosis in 2002 I have seen most of the UK specialists and several US drs as we have searched for a cure. I am just one of the unlucky ones who gets the stupid type of RSD. Have you considered Dr Curry? Some people I know consider him their saviour.

Love

Frogga xxxxx

I too have ballance problems.. and when I was in the pain clinic here in Canada they tested the muscle tension (computer bio feedback) on a muscle just below my knee and it measured 20. I was told that normal was 4-5, chronic pain patients usualy 7-9 and 12 was the highest they had seen prior to me. I guess they had never tested locked RSD muscles aparently.

I hope things turn around real for Ali soon

hugz mum.
Sandra

Andrea,

I am so sorry you are having such a struggle with Allison and her treatment. It would seem that she is not getting the multidisciplinary services that are really required to have the best chance of remission or cure.
She is so young and her RSD/CRPS is relatively new that she would really benefit from a 'team approach' to her care.
I think your idea of going to see the specialist pain centre is a great one.
It is no wonder she is so tense-- the poor girl is watching life from the sidelines, this is hard to do as an adult so I can't imagine how it feels for someone with their life ahead of them.
So many of her symptoms are going to be exaccerbated by her stress levels, I do hope that perhaps a whole new approach from a new team might be the answer.
Wishing you heaps of luck
Tayla