Hey Mike

Thanks for your thoughts! it's great getting other people's opinions. I have suggested ketamine comas and every doctor is skeptical about them - apart from my pain dr who put me on ketamine in the first place, but, who doesn't believe it's worth going in to a ketamine coma (I mean with the WONDERFUL british health system it was a fight to get them to pay for the prescribing of ketamine, for my referral to a "specialist - HA HA HA" in Bath and all of that - the fights to get ANY funding was impossible and finally achieved by constant persistent yelling down a phone.

I also suggested a drug pump and the drs were even anti that.... in the UK the treatment for RSD is really dreadful - you are seriosuly left to rot. Until recently I saw my "specialist" yearly..... !!! which considering the rate my condition can change is not good... so... I now have appointments every.... 4 months! I know. Also, I can't contact her about any changes in the RSD because she says it's my GP's responsibility (who then phones her for advice to be told - well, just deal with it). We have almost none of this "prescribe over the phone", "ring him up" etc.. we have firmly scheduled appointments which occur every couple of months with no flexibility. We rarely get the secondary treatment -eg physio/ OT etc without a fight, or when you do get the physio it is only for 6 weeks as they won't organise physio for chronic conditions that don't improve. For an example. At one point I was very ill from the RSD and my consultant needed to admit me to hospital, but there were no beds available. It took him 10 days to find me a bed so I could be admitted (he wanted me on the rheumatology ward because of access to treatment and nurses who KNEW what RSD was). This is just an example of how badly RSD is treated.. or, looking at physio. The normal physio department can only offer me 6 sessions, but, they can't actually do any of the physio because they are not set up for neurological disabilities. HOWEVER, the neurological physios won't treat me because my disease is apparently not neurological enough. So have ended up with both of them refusing to treat me as I was "too hard". They threw me onto home physio but of course, home physio's can't do treatment either - because it's neurological and I don't have a standing frame (which no one will give me because I'm not neurological enough but am too neurological for an orthopaedic one, which was taken off me because my disease got too neurological and I wasn't safe to stand with it).

I'm impressed if you understood that.

I have been researching the journal articles on dystonia and have contacted a couple of the key names in dystonia treatment with DBS - emailing them to ask what their opinions would be. Haven't heard back yet though. I am also getting a second opinion (my neuro would do the surgery but I'm getting a second opion from the other neurosurgeon).

There won't be a trial with the DBS - however, I will be awake for the lead placement and the voltage testing.. so if it hurts too much I guess they'd just remove it. I guess my biggest fear is that the RSD will move into my brain and cause encephalitis. Also, as the batteries have to be replaced 6 monthly I think I would end up with some RSD issues from it.

I don't know. There are times I get so frustrated with this disease - I just get frustrated that I try so hard and yet I still get nowhere, in treatment or in any other way. It's just frustrating, all I want is to be normal, to be able to move around and be pain free, to be able to go to uni, get a first and then do my Phd.

Intrude any time - but I hope this email shows how useless the NHS is and how retarded many of them are....

Thanks again for your thoughts - any thoughts on how to murder all the NHS fund managers??? and UK drs??

Love

the amazing bouncing frog queen xxxxxxx