Alison had a minor procedure carried out last Wednesday to remove the ingrown toenail on her RSD leg
We were warned at before hand that she could experience a flare given that the previous nerve block had caused balance and coordination problems
Unfortunately they were right !!! The whole of her RSD leg now shakes and jerks uncontrollably for about one minute out of every four - we are timing it to see if it begins to subside any, but as I write it has not
Alisons consultant came to see us yesterday and was extremely concerned about the latest development
We have to ring his office on Monday morning to let him know if things are still the same and he will then admit her and try to inject drugs directly to try and slow the tremors down
The reasoning behind this is that within 20 minutes of the injection he will know whether or not the drug will be effective, rather than spending a week building up to the required doage orally only to find it is ineffective and needs to be discontinued
He has explained that there are no guarantees that any of the drugs he may try will work and that movement disorders are extremely difficult to bring under control. He has also hinted that there may be need for more drastic action further down the line if this persists long-term (eg SCS / Pump) dependant on the side effects any oral medication may have
I am also going to contact our other hospital in London to let them know about the current situation as I know they have recently treated a young girl called Jessica with similar movement disorders / RSD, through splinting and Physio, though it has taken four months as an inpatient to achieve the desired outcome
I was wondering if anyone out there has experienced something similar and found any medication that may be effective or that we can recommend to our Consultant
Many thanks
Andrea

Big but gentle hugs to Ali and you!!


I have this shaking off and on depending on stress and pain levels. I "think" the doctor called it essential tremors. I take clonazepam (Klonopin®) which works somewhat for me. Doctor said we could try BOTOX® injections but due to that being shots I have decided to wait.


I hope the doctors find something soon that helps Ali!!


You are both in my prayers!

Abbie

Aw, poor kid, she sure doesn't need that. Hang in there, Ali! We miss you.

Thanks for the update, Andrea, please keep us posted.

I, like Abbie, have essential tremors. I was started on Neurontin for nerve pain and it has helped me with the tremors. Not quite the same as what Ali is going through but that is all I can offer from my experience.

I do hope she starts feeling better and that the doctors can find something that will help her. Give her lots of hugs from us.

Hi Andrea,
I'm so sorry for what Ali is going through - I hope they find a medication to help her. She is in my thoughts and prayers and so are you.

terry

Thanks for all of the replies - I am going to write down some of the medications you mentioned and talk to Alison's PM dr about them
I will let you know what he says as I am ringing him tomorrow
Love
Andrea

Have missed seeing Ali around. Please tell her that I am keeping her in my prayers, and thanks alot for the update, Andrea.

take care BOTH of you.

[
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

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

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!