[frogga]

Hey peeps.....

Well. I saw the neurologist yesterday. An 8 hour round trip for 5 botox injections and a referral.

He believes my only chance of having some improvement is if I have the DBS inserted. However, when I explained about the RSD he thought I was talking about repetitive strain injury. err no. Then when I asked him to tell me what RSD was he was like "well, it's a severe chronic pain syndrome caused by the sympathetic nervous system". So, I suppose he's almost there..

(DBS is deep brain stimulation - it's used to treat dystonia and it works sort of like an SCS but for movement and it's in your brain and shoulder not your spine).

However, I have been in SO MUCH PAIN and am still in that much (fuzzy vision, unable to sit upright without passing out, shakes, blinding headache, can't stand noise or light, MEGA pain, colour changes, swelling, almost unable to move, dizzyness) etc.

But before I have it done I will have to see the neurosurgeon, have MRI's, CAT scans and all that lot as well as then having to return to the hospital every 6 -9 months for new batteries to be replaced. I just don't think I can survive the journey again.

I don't know what to do. I want it. But not if it will worsen the RSD. But then again. How much worse can my RSD get? It might improvne my quality of life? but I have spent the last 5 years clawing back my ability to study and tp be able to enjoy normal stuff. Basically, it's taken me 5 years to get to a point where I can sit in my wheelchair most of the day, be able to have conversations and hang out and occasionally go out with my mates and do well in uni. I just can't face having to do the whole climb again.

So I am stumped. It's impossible to make this decision. I just want the pain to GO.

Thanks for letting me rant!

FRxxxxxxxxxxxxxxxxx

[fmichael]

Dear FRxxxxxxxxx -

First of all, please see my reply to your last under Good grief, Has this EVER happened to any of you RSD'ers? .

But as to your neurologist, since you have to wait months to see a neurosurgeon, isn't there some RSD specialist somewhere in the NHS, say at a major medical school with who you could consult? This may be crazy, but with all of the money that is being spent on your care right now, I can't help but think that there isn't a genius somewhere in the system who could figure out hour to get you funded for a German ketamine trial. If it works, it would be a far less radical intervention than the surgery that your neurologist is proposing, this from someone who has only the vaguest notion of what RSD is all about.

What happens is you can't tolerate the vibration from the DBS? In know that with SCS they can hook you up to an external test unit for a week ir so, before they do the surgical implant. Is there any equivalent test run for DBS?

Forgive my intruding, but I feel compelled to share these thoughts with you.

be well,
Mike

Hi Rosie,

I am very concerned as well.

If I recall rightly, I remember you mentioned you had a infection. Are you on any antibiotics?

In my case I believe something could of happened with the brain/blood barrier. Their is no doubt my brain is involved as well. In the past I have had extensive blood work. I am still waiting on my lastest tests. But what I want to bring up is something called a HERX reaction to antibiotics, if your on them.
Here is a link about it.

http://lassesen.com/cfids/herxheimer.htm Love, Roz xxx

[frogga]

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

[frogga]

Hey Roz,

Thanks for the link. - though. Very scary! I was on co-amoxycillin or something like that for an infected pressure sore. I have now come off it thankfully and am back on using the hydrogen peroxide and iodine solution.

Why do you feel that your infections have crossed the blood/ brain barrier? is it because of cognitive issues (which you don't appear to have) etc? would be very interested to hear.

I really hope your cellulitis is doing better - it must be AWFUL to have it in the eyes...

Thanks!

Rosie xxxxx

[Jomar]

frogga - You are an AWESOME young lady!

It sounds like a totally retarded health system!

But you are tops in my book - I wish the best of luck in your fight for the best care you can get.

Have you considered writing the Queen mum? I'm not joking!

Ada got some help by contacting US legislators - maybe you can write for your cause to a high official in UK government?
It couldn't hurt to try it....

[frogga]

Hey Jo

erm.. the queen mother's dead?! unless you mean the actual queen? I've met her once! it was amazing. she really has this regal presence - but bizzarely she is really quite tiny! bizzare.

Unfortunatly my father is in politics/theology - not that that helps, he's tried. Mums tried (admittedly, she's a nurse, but she knows alot of orthopeadic drs who just go "RSD - nothing we can do.")

Sounds like it is worth another try - especially as I'm in uni so under a different MP... who happens to be Lib- Dem - and thus good... (or more interested in creating a functioning health care system than labour! - NOT that I'm starting on politics).

Thanks!

Rosie xxxxx

Dear Rosie,

I have cognitive issues going on. Hang in their with me on the Blood/ Brain barrier stuff. I will address it.

I have just purchased this book.

http://books.google.com/books?vid=IS...4arokI#PPP1,M1

Hugs, Roz xxx

Frogga read over some of this text, if your up for it.

http://books.google.com/books?vid=IS...DxMwk#PPR15,M1

If I smile maybe it will put more blood to my brain. Love, Roz

[frogga]

Hey, can't manage reading right now - but thankyou - as soon as it calms down abit I'll read them - everything is just on fire and spinning and wrong and fuzzy at the moment.

Thanks for the info!! Rxxxxxx