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.

Please know that you are in my thoughts and prayers, Ali!!

Sorry to here this Ali. Andrea, Please keep us up to date. You are in our thoughts and prayers.

Hi Andrea and Ali,

I'm so sorry about the tremors and jerks. Mine were pretty active in both legs and arms. Also electric shocks body wide. Would lift the head right off the pillow. Dr. started me on Neurotin slow at first and up to 3200 mg. to get everything under control. The side effect I noticed most was extreme tiredness. When Lyrica become used more, I switched over and up to 400 mg. still tired but rarely have any tremors or jerks. They Lyrica was more effective pain wise and was able to reduce pain meds from 6 a day to 4 per day. vicodin-5/500. I would do a lot of research on the scs before undergoing that procedure. There is a lot of information on brain communities in past years. Hope the best, I'm on a lot of meds, one is lorazepam 2 mg. 3 times a day. I find when I'm calm and more relaxed- less likely to have other bad symptons. Take care, Loretta Jewell RSD 14 years after surgery. 59 yrs old.