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!!

Congrats on the gettin accepted to the program.. im so happy for you .. i knew that you would get in!!!

onto the dystonia.. i am sorry that the botox wont help ...they wouldnt do it for me for my TMJ either. what he is talkin about the bacolofen pump is the same pump that i have for my rsd but mine has fentanyl in it.. they use these pumps for alot of different reasons. it has helped me get a hand on my RSD. and am able to be managed vs. having to go in all the time for meds etc.. have you taken bacolfen in pill form at all.. i did this for about 2 yrs for the muscle contractions that i have and it stoped working so i went to zanaflex..

so proud of you for getting in the program.!!!

carrie

Congrats on the College, Ali!

I remember reading somewhere (that I can't recall, but I'll try), that the FDA has just ordered a "Black Box" warning on Botox, for exactly this type of use. They're apparently finding some dangers. I would think it would be a good idea to check into that.

Also,
I've taken Keppra @ bedtime for years, and I never noticed any side effect. I took 500mg. It helps the pain somewhat, but I didn't notice any side effects.

I hope you feel well, Ali!
Best wishes to you always!

Pete
asb

Sad that that is what it takes these days for someone with a health issue or disability to get into a course!

I am very glad, though, you got accepted!

I'm hoping that some decisions can finally be made about your treatment as well. Someone has to have an idea of what road to take.

Thank you all for the advice and support!!

I am SO glad that I got accepted onto the College Course also as I really wanted to do it and prove that I can do something even though I have RSD! I can't wait until September now until I start lol! I know it will be hard at times but it's something I really want to do so i'm sure it will be worth it!

My mum is going to the school centre where I go tomorrow for a meeting to see whether they will allow me to go there full time as school just isn't working out at all. All of my friends have disappeared so I am on my own at break and get really depressed. Theres been a lot of stress there also which hasn't helped with things. Hopefully the school centre will be able to ease things a little. I like my friends there and they care about me a lot - they always ask how I am which my other "friends" don't at school - I think it's easier for them as they have problems also.

I'm not sure what to do with the Botox. I really want the dystonia to go away as it affects my life a lot like the RSD but don't want to risk making things any worse either. I think we really need to do some careful consideration into it before we decide to go ahead with anything. My grandad has practically begged me not to do it as apparently he has spoken to someone who is a nurse and said it is really dangerous but obviously everyone reacts differently.

I went to see my Physical Therapists today and they said that the Dystonia in my foot is still really bad. I had a splint made at the end of last year and they have been trying to get my leg into a neutral position using that but it doesn't really seem to help that much. They want to see how I get on during the next 2 PT sessions and if that doesn't work then they want to admit me into hospital to do some one-on-one work. I'm working with a Neuro PT at the moment and she is really nice so i'm hoping she will be able to come up with some ideas as to what might help.

Carrie - Thank you for the well wishes and advice! I did take oral baclofen but it didn't help me that much and my Doctor said that he felt it made me too "floppy" as I couldn't sit upright hardly on it so he took me off it.

Pete - Thank you for the info on the botox - I will have to look into that with my mum and see what I can find!

Thanks again everyone and i'll keep you all updated!

well i hope that they are able to help even if that means you have to go to the hospital .. which i know you hate because we all hate it there LOL
i also had a hard time at "reg" school and had to fight here in the states because they hadnt really DX my RSD and it took months but ended up at homeschool which off course was easier..

i hope that you can get some ground made on the dystonia

carrie

I'm glad you are being cautious about the Botox, Ali.

Big Congratulations on being accepted into the study course! That's wonderful!

But now you won't be able to hang out on NT, cuz you'll be studying, lol!

Thank you for the update. I'm wishing you good luck when you start your course next fall. My daughter is taking some college courses next fall also. You will do well, I just know it! Hang in there! You're a tough young lady!!!!

Yeah about the school. You are amazing and am so happy this worked out. I am sorry about your current school and friends. I can relate to crappy friends and you have to try and this is hard but remind yourself they have issues. A true friend is there through the good and bad times. I wish I had more answers or suggestions for treatment for you. You may have mentioned this but have they thought of a temp scs to see how you do with that? Sending thoughts