Finding the right doc to treat myoclonus!!

[Heaven327]

My sister messed with something she shouldn't of about eight years ago and caused her to have a seizure.  She is epilleptic anyway but this seizure was awful.  It resulted in a stroke which then in turn put her in a coma for three weeks.  Afterwards she was diagnosed with myoclonus.  She used to live in another state but was not properly being taken care of so I moved her to Alabama with me.  Here is my problem...She was on an experimental drug called L5-HTP.  Because of the experimental stage of it I can't get a doc here to even attempt to get her back on it.  With this drug she could walk and wasn't nearly as shaky (muscle tremors throughout her whole body).  Now she can't walk and it is very disheartening that no doc will even try to get her back on something that actually worked for her.  Any suggestions will help.  The following is a run down of the meds she is on at this time:
Lamictal
Phenobarbital
Lodyson
Depakote
Librium
Singulair (recently changed from Theo-24)

Please help me find or do anything I can to get her back to the way she was because it hurts to see her so frustrated.

[CCF-Neuro-M.D.-JT]

Very sorry to hear about your sister. If she has juvenile myoclonic epilepsy, depakote and lamictal should be helpful. But if it's due to oxygen deprivation, this may be more difficult to treat. We have had some success with klonopin here at 1-2mg/day for patients with myoclonus due to other causes. Talk to your doctors about a trial of klonopin. University of Alabama has a strong neurology program overall. I don't know any specific epileptologists there but you could consider scheduling an appointment with someone there. Good luck.

[Heaven327]

I have talked and talked to the docs here and I keep hearing the same thing..."We don't have the funds for this or that or the other".  I hear more excuses why not than I hear about trying something new to help her.  The experimental medication she was on (L5-HTP) worked wonders for her...at least with it she could walk and now she can't and not one person is willing to even attempt getting her back on something that will help her...when I do find someone that might have the utilities to help I only hear that I need a referral but no one is willing to give it to me.  I am desperate to give her life back to her as normal as it can possibly be but I am no doctor and am not authorized to give her anything that will help...I am at a loss of what to do anymore because of all the rejections.  I will however try to contact someone at the University of Alabama and see if they can offer new hope.  Thank you.

[shamrock]

I know its no help for your problem.  But I sure would want a sister like you if i were sick!  Good luck & I will pray for you both.

[pari]

My brother is 20 yrs old and is diagonised with myoclonic epilepsy and he is in India.
I have his reports with me in the philadelphia,United states.
Please suggest epileptologists or experts for me to get further information.
He is presently on lonazep 2mg and this has been controlling his sezures but he needs physical assitance for all his daily activities.He is slowly detoriating,
Please help me asap.
any other suggestions will also be appreciated,
Thx,