[fmichael]

Dear Rosie -

I note that in another post you mention having urinary hesitancy ("unable to go for ages"). From what I've heard from my doctors, and experienced up close and personally, that's part and parcel of oxycodone use, where one of the first things that serious levels of that drug do is relax the muscles of the bladder. Yes, the muscles of the bladder, it's not all gravity dependant.

I don't know if this is an option with the UK NHS, but where I assume it picks up the cost of your 24-hour aides, have you looked into the possibility of a Prialt (Ziconotide) pump?

Not only has it gotten some pretty good press from people with severe/intractable RSD, but there's also some new and admittedly anecdotal research out there suggesting that massive doses of the drug - derived from a really nasty snail venom - has put one desperate case into nearly complete remission. Check out "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in Child Using High Doses of Intrathecal Ziconotide," Stanton-Hicks MD, Kapural L, Journal of Pain and Symptom Management 2006; 6: 509-510 (Letter to the Editor), which appears, alphabetically by author under the "Treatment" heading of the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html (fyi: Michael Stanton-Hicks is one of the better known RSD docs in the U.S.)

Of all people, you sound like someone who might really benefit from this development.

Mike

Hi Rosie,

I have seened a Doc who trained under Michael Stanton-Hicks who Hicks is at the Cleveland clinic in OHIO. My Doc who trained under him is in S. Cal.

He is the Doc who told me my cells have changed.

You have so much going for you, you really do.

Youth is so much on your side as well. My hope for you is that one day you can roller skate into the Docs office. While they take off their glasses because they are in shock from what they are seeing.

You are always in my prayers to get well. Hugs, Roz

[frogga]

Heya,

Thanks guys!! One of my friends is being treated with a Prial pump at the moment and says it's amazing!!!!! Unfortunatly the b******s in the NHS won't even consider it.... (they hate even considering pumps here - doctors suggest it and then the second they realise it's surgical intervention they back away and suggest mor pain psychologist support or an increase in pain killers). It sounds REALLY good and i have heard a lot of ancedotal evidence about it. Sometime I don't see the point in seeing my (main) consultant, all she does is talk to me for half an hour and then goes ok, see you in 6 months...

Now, skating into the drs - that would be totally awesome!! (and telling Social services where they can stuff their care package!!!!). I saw the OT's yesterday and it looks like hoists are going to have to go up. There are times when I feel that whatever is wrong with me it's just not fair.... but - I suppose the question isn't why me? but instead, why not me?

Thanks guys - I do pray nightly that we will all leave these three STUPID letters behind (RSD)

Rxxxxxxxxxxxxxx

[fmichael]

Rosie -

Sorry to hear about the NHS prejudice against implants - it's a little bizzare when you think of the cost in paying for 24 hour care as an alternative - but please look at the Stanton-Hicks article carefully.

What they did was an iv infusion - not a pump - albeit at more than 3x the suggested pump dosing. I don't know if you could get a dr. interested in doing it, but if you could, it might be a nice way of flying in under the radar.

Mike

Hi Rosie,

Don't worry about Social Services. Just forgive them for being so narrow minded so it won't hurt you. Take every pound note you can. Every little bit helps. It really does. Money will never make us happy but poverty won't either, it helps to give us some choices. Big hugs, Rozxxx

[frogga]

LOL Roz....

atm I get roughly $1000 a week care, my bed alone is $10,000 (roughly calculating from UKŁ to US$), an $8,000 wheelchair - and waiting for a new $4000 manual one...you'd have thought that actually putting money into research would SAVE them money!!!

Oh well - I can keep nagging, and keep being turned down

Your right, disability + poverty SUCKS --> I am on the same level of student loan as my friends - but I have to pay both my carers and my rents, food for both of us and for all the miscellanous extra stuff... such fun!!!

Love ya

Frxxxxxxxxx