Hi everyone,

Just wanted to update you all on my appointment today with the Neurologist.

We went to discuss treatment options to try and treat the Dystonia in my RSD leg. He mentioned Botox and said that my PT's and Doctor had wrote to him about it but said that in my case, he doesn't know if it is worth taking the risk especially due to the fact that the 2 previous nerve blocks made me so much worse (one put me in a wheelchair and the other caused severe myoclonic spasms). He said that he doesn't do Botox so we would have to speak to an Orthopaedic Consultant about it. He said that he is happy to do the referal but that I need to consider it really carefully and realise that it is my decision and that there is a possibility that it can put me in a wheelchair or make things worse.

I'm not sure what to do, I really want the Dystonia to go but certainly don't want to be put in a wheelchair again! I guess we will just have to weigh up the pro's and cons and give it some really serious consideration. My mum is going to ask whether we can get a referal to an orthopadic dr to see if they think it will work or not.

My Neuro also suggested trying a med called Keppra however he doesn't think that it will work for me and he also said that it can change your behaivour (either make you very depressed or aggresive) so wasn't really willing to try it. I am already a little depressed about having RSD so don't want to risk making things any worse!!!

The Neuro said that if I had full body Dystonia, it would be easier to treat as they could implant a Baclofen pump into my spinal cord and it would probably work but because the Dystonia is only currently in 2 limbs, he doesn't think it will be affective and will make other areas floppy and could risk putting me off my feet again. My nanan had a Baclofen Pump for her MS and it worked really well but obviously, it is a totally different situation with RSD!!!

I guess we still don't really know what we are going to do at this point. No doctors are currently willing to do the botox and after being told by several doctors that it will probably make me worse, I don't really think that it is worth the risk.

I see my Neuro again in 6 months (he only sees me every 6 months as my PM Doctor and PT's deal with the situation as he doesn't specialise in RSD) although we can make another appt to see him should things get any worse.

I have an appt tomorrow with my PT's so will discuss treatment options again to them then.

I did get some good news today though. I got accepted onto the Health and Social Care Course at College! I am sooo glad!! I know it will be a lot of hard work but I think it will probably be worth it in the end! I have to meet up with the course providers on the 19th May to discuss placements due to my RSD so I am keeping everything crossed that it will go OK and that they will allow me to do all of the placements. I start the course in September so there isn't that long left really!! It took a LOT of hard work to get onto the course but it was well worth it in the end! Apparently my mum upset some people with saying that I had a right to find suitable placements but they should have taken that into consideration also. Anyhow, i'm just soo relieved to have got a place on the course and that the teachers finally saw sense!!

Take care all of you and i'll keep you all updated!!