[frogga]

Hey

Well I saw my neurologist on Friday for some more botox shots.

As soon as I came in the door he was like "what on earth has happened? you look so much worse". Gee. Thanks for that. (Basically I now have almost no independent movement, can't use either arm, spine, neck or either leg, can't control my powerchair, can't feed myself and all that rubbish). We talked for a while about what's been happening and he believes the same as me, that the RSD and the dystonia are so ingrained with each other that I am in a negative cycle of muscle spasm, leading to pain, leading to more spasm, leading to more pain etc. So he has agreed with the PM dr to try the baclofen pump and see if it helps and try either morphine, clonidine, ketamine or prialt through it as well. He is going to investigate whether I can have the ketamine coma (which he'd never heard of) but he thought it sounded promising. We both agree that if something doesn't help soon or at least slow down the progression then I am likely to be very ill soon, but I really trust him to help as much as he can. I'm really scared by how fast I appear to be progressing, in six weeks things have changed so much and the pain just seems to be getting worse and worse.

It was so nice to see a doctor, well, a neurologist, who treats me as an intelligent equal human being. He was also asking how I am mentally and I said that I'm not depressed (I'm not) but I'm frustrated, angry and fed up of being in pain and not able to move - and jealous of those that can.
I spoke to him about the full body spasms I've been getting recently and he said there wasn't much I can do about them - they are going to happen. There are some meds I can try if I want but I'm not going to try them yet.

I think that was about it. I think it's positive because he has realised how ill I am (though I hate having to confront the fact that I am this ill) and I think he is going to do everything he can to help me. So fingers crossed he can help. If he could just give me the movement in my right arm and elbow back I reckon I'd be happy.


Oh, and apparently I am more than 1 in a million. So I'm special (apparently he can count the number of times he'd met people like me on one hand!)...

Loads of love

Frogga xxxxx

[Jomar]

This sounds promising, I'm hoping for the best for you.

[Sandel]

Hi frogga..
This doctor sound like he plans on taking good care of you.. I know what you mean by him knowing how ill you are.. it is so hard to get good care when your doc dosn't understand how bad off you are, the baclofen pump sounds promising.. I so hope it helps you Rosie you realy deserve a break.. the ketamine is also very promising but far less accessable *sigh*.. I realy hope it works for you, when's it look like this pump might happen?.. it would be so good for you to loose some of that dystonia so you can get back some mobility.. have they looked at botulism shots or is that the botox?

Big hugs bud painfree ones

[wakegirl]

i had the bacflon pump thing for a while..it was just meant to be a short term fix so only limitted additional meds were added. i worked really well until i managed to yank it out because it was leeking water on me. i am sure yours will be much better...mine was done by my doc while she had my neuro on the speaker phone...so it wasnt the ideal set up. it was either that or drive 3 hours in a major snow storm to get to the neuro. it definetly mellowed out my pain for the time i had it.
i hope it works well for you...ps if you are awake and your doc is calling someone else for advice run...just kidding it wasnt that bad and between that or ending up in the hospital during an avs run for the cup wasnt going to happen.
good luck
hope it goes well

[ali12]

Hi Frogga
Its Alison here. I really hope that you get the Baclofen pump, you deserve it.
I have heard about the ketamine coma treatment - you can only get it done in Germany though and there are risks involved. I understand that the Ketamine coma treatments worked for many people - but you have to be careful when you come round in case you get knocked or injured - the pain can come back worse than before.
Whilst you are in the coma, your nerves start re-wiring to how they should be. Your brain gets normal signals so you are not in any more pain.
Pain free hugs
Alison

[tayla4me]

Dear Rosie,


How wonderful to have someone who listens and doesn't write you off!
I hope all works out for you and that your baclofen pump is the answer to some of your problems so you can have an improved quality of life.
Love always
Tayla

[frogga]

Hiya All

Thanks very much!! Sorry I've been a bit quiet I've been pretty ill for the last... dunno! At the moment I'm dealing with some horrible symptoms as well as alot of university work and a lot of university voluntary work. I've been having horrible convulsions recently and stopped breathing through several. We have discovered I have a problem with sugar - fireworks night I had like 4 bites of candyfloss and had convulsions for over an hour so attempting to cut most of that out at the moment.

I've also been getting horrible dysautonomia symptoms - very fast pulse rate (120 bpm at the moment though has been well over 150bpm which is horrible! i've also got very low blood pressure so have horrendous dizziness, almost total inability to sit, pain, back pain, shortness of breath, headache and muscle weakness etc. It is a nightmare because it is so hard to deal with as my life relies on being able to sit up, but nothing seems to help apart from lying totally still in the dark and silence in bed. Doesn't help that I've been too busy and had too many major commitments to be lying in bed - so I'm spending every second possible in bed when I can but I just can't abandon my commitments because of being ill - I know I just have to fight my way through it - just makes life pretty hard! especially as it means I can't eat so it's making me feel rubbish because of that.

I am pleased that someone has finally acknowledged what the RSD is doing to me and that I have found a dr who is going to try something to try and slow this progression down and hopefully reverse it!!

Love ya and thanks everyone!!

Rosie xxxxxx

[GreyHoundLover]

Good luck Rosie,

What you are going through is just horrible , I can't tell you how sorry I am.

Here you are with all your pain taking time for others...what a nice person you are!!!!

I hope this doctor gives you your well deserved wings back soon!

Please update, I will be eagerly awaiting the results of the work this doctor will be doing with you.

Loves and Hugs,

Melissa

[LMJunior]

I am so happy that you found a doctor that is willing to help you. I will pray that the pump will bring you relief from the awful pain your experiencing. Take care I hope things improve for you soon Rosie

Laraine

[dagm131]

i know you didn't want to try anything for you spasms, but 2mg xanax has been a god send for me, and you can break then into 4 if you want. my doc just started me on them a couple of mouths ago and with the other med vicodin plus what pain doc was given me pain has been so much better. but now do to new medical problems (posilble cancer ) i think he is going to take me off the vicodind so i am going ot ask him to up the xanax, which he probably won't do, but since we have a 7 yr history i can ask. now the pm is another issue i was on 100 fentanyl and diuludid for bt, when i starteed to see him, he took me off the d. and started me on the methodone which was the one med my pcp didn't want me on still not sure about this med but it was either this or elve which does nothing , so i have been trying the methodone. but as i said please give the xanax a try it has done wonders for me and not just the spasms but pain also ( which could be from the spasms) hard to tell with al the new medical problems. best of luck i care hate to see anyone suffer d