Hi everyone - it's Alison here

Sorry that I haven't been around a lot, the spasms in my leg have been causing me problems so I have been pretty busy with hospital appointments and resting etc - hopefully I will be back to posting soon!!

I saw my PM doctor yesterday to try a muscle relaxant called Kenadrin that is used to treat movement disorders and Parkinsons disease. Unfortunatley it didn't help with the spasms.

My mom has to ring my PM doctor again on Monday to see what he wants to do now.

My doctor did say that in his 10 years of treating RSD, he has only seen about 3 children with the sort of twitching/jurking that I am experiencing, therfore he doesn't know which meds/therapy to use.

I will keep you all udated

I hope you are all having pain free days

With love and best wishes
Alison

Ali - I am so sorry that medicine didn't work for you. I hope they find something that works soon so that you can get some relief.

Hang in there and know that I am saying my prayers for you.

aww..
 

Hugs my young friend.. you are in our thoughts, Ill look around for similar cases and see what they are doing for that kind of dystonia.
Stay strong Ali, :hug:
Sandra

shakes and tremors meds I use
 

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Andrea,, so so sorry to hear the pain Ali is suffering please give her my love.
I have tremors and spasms where all of a sudden a limb or my face goes in to these horrible spasms and or my leg just shoots out to the right or left , or my thigh swings over violently. Ali's sounds much worse. My PM put me on Bacolfen 10mg am , 10mg,aftermoon and 20mg at bedtime. It has helpded me a great deal. Hope this information helps. God blesss. CZ

Just a quick updated...
 

I went to see my PM dr yesterday, me and my mom discussed using Clonazepam but my dr has decided against this, basically because some of the meds I have already tried are in the same group and have had no effect. He is also concerned about the effects long term may have on my body, given that I am only 13. He has not ruled it out totally but will only use it if the Neurologists within his team approve it.

I have been prescribed a Beta blocker called Propranolol which I started last night and step it up over the next few days. The thinking behind this is that it will suppress the Adrenaline that may be making the tremors worse since the op to remove my toenail.

He is giving it a month and then I will see a Neurologist if it doesn't work to discuss futher treatment options.

In the mean time the PT's are organising a leg brace to try and stablise my knee when I am weight bearing and will try once again to get me walking, without my leg shooting out.

So heres hoping that the new drug helps.
Take care and i'll keep you all updated
Alison

Ali
 

Hi Ali!!

You are amazing! You have to know we all are in your get better cheering section, and think you are absolutely incredible! You are soo up beat that it encourages everyone else to get that up beat attitude.

I hope they find something that gets you back to some kind of normalcy soon. I have ya in my prayers, big hugs to ya! :hug:

Thank you so much for your kind words, Allentgamer - they mean a lot.
I will keep you updated and I hope you are having a good day!
you're all in my thoughts
Alison

Ahhhhhhhhhhhhh Ali,
You keep on keeping on don't you??? You are such game little thing. I know it sure doesn't seem like it now but you will grow up to be such caring understanding loving young woman because of all that you have had to experience when so young. You are really an inspiration to all of us 'oldersters'. If you can manage to get thru all that you are then we can get thru what we have happening to all of us.

I pray that every day is a better day for you. One day it will be so true.

Gentle Cyber Hugs to our young friend,
Deb

This might be wholly inapproprite in Ali's case but I have a very fine tremor at night and Tizanidine does a good job of suppressing it. The tremor is hardly even noticeable but it keeps me awake.

I am so sorry. I remember your posts and you are such a strong young lady. You amaze me. Keep fighting and I know things will get better for you.