Thank you all so much for the kind words and support! I'm SO glad that I got into college also as I really wanted to prove that I CAN do something even though I have RSD!!! I know it will be a lot of hard work but it is something I want to do so hopefully it will be well worth it in the end!!

I'm still not sure what to do about the botox. I REALLY want the Dystonia to go as it affects my life sooo much but on the other hand, I don't want to make my RSD worse and be put in a wheelchair again. I think we really need to weigh up the pro's and con's. I went to PT on Wednesday and they suggested seeing how the next 2 sessions go and if things dont improve then they want to admit me to do some intense work before trying the botox which I think is a good idea.

My mum had a meeting with the school centre yesterday to see if I could possibly start going there full time as school really isn't working out. The teachers were really understanding and took the time to listen. They agreed with us that you cant force someone to be your friend and that the extra stress isn't helping. The teachers said that they dont see any problem in me going there full time but that they would need to speak to their boss about it as he makes all of the final decisions. Hopefully next week we will have some answers as to whether or not I can go there!!

One of my close friends left the school centre today. She is emmigrating to Australia so it was a pretty sad day. It's kinda hard knowing that i'll probably never see her again. She has helped me through a lot of difficult times and has always been there for me. We both have email though so hopefully we will be able to keep in touch via that once she has settled down.

Thanks again everyone and i'll keep you all posted.:hug:

There are so many different muscle relaxants they could try before they resort to Botox.

For example. I am on Tetrazepam, I react to it well, it does what it's supposed to and it relaxes my muscles. I once tried Baclofen. What happened? Not much. I didn't respond well to it at all. So maybe it's key to find the muscle relaxant that works for you. Different meds can have a different effect on different people. But I'd try the muscle relaxants first. That's what I'd do... I'd not skip that step and go straight for Botox.

Hope you'll get some great news to share next week about school.

It's really sad about your friend, but hey... thank God for the net, right! And maybe she'll come back for vacations with family.

Thanks. I have tried all of the muscle relaxants available so that is why they are looking down the route of botox as nothing else has worked. I have been on lots of muscle relaxants for the dystonia and myoclonius and none have really helped and they made me really drowsey. I will look into some muscle relaxants though to see if theres any more available to try but I dont really think there is from what my dr told us.

Thanks again.

Ali - is it possible for you to leave the UK and go to another European country for treatment? For instance, Germany has ketamine. They likely offer the multi day long infusions as well as the comas. Perhaps you can find Lidocaine infusions in a nearby country . It seems that you are pretty limited in your choices right now, and your suffering has become more severe since your arm injury last month.

The family of a boy from my state (in the US) that needed financial help getting to Germany for the K coma held numerous fundraisers and collected money through a website.

Sandy

Thank you for the suggestion.

I'm not sure if going to another country would be an option at the moment as we are really stuck for money (as we all are) and most of the neighbouring countries near here have the same health service. It is something to look into though. We have spoken to my doctor about it before and he said that he doesn't know if anywhere else would accept me either because of my age etc.

I think our main problem is my age and the UK's health service. Because I am only 14, I can't have many of the medications and treatments that adults have as the NHS (National Health Service) wont cover them. My Doctor is always having to force things to try and get me some pain relief etc.

The NHS is really bad sometimes. We can't get medications if our insurance will cover them as we have to get a lot of doctors to sign for them etc. We can be waiting months to get an appointment with another doctor (it took me about 3 months to have my consultation to see the doctors at Great Ormond Street Hospital!)!

I'm on oral Ketamine at the moment and I wish that the UK would do Ketamine infusions but apparently they aren't licensed at the moment so that isn't really an option. The Ketamine takes my pain from an 8 on the pain scale to around a 6 usually but since my arm has been in a flare, it doesn't seem to be working as much. My Doctor has increased it so I can take it 3 times a day so hopefully that will help more.

Thanks again for the advice - it is worth looking into.

I saw a documentary about Great Ormond Street Hospital once but that it was so difficult to get into... well, of course they don't mention that part. :rolleyes:

Ali,

I wish you the very best in finding something that works. If muscle relaxants won't work, then what? Are you really sure the only thing left is Botox?

From what I've heard not everyone is happy with the NHS, but I don't know that much about the system in the UK, only that the NHS has a sort of a bad rep, as in: limited and bad health care, or am I wrong in supposing that?

I have to say... It's not easy for any of us, but in your situation (being 14) it's even harder and you are handling it all so very maturely!