Reflex sympathetic dystrophy with foot dystonia.

[mars38]

I have been having burning pain in left foot and ankle since June 2006. I was just wanting to know if anyone else with rsd has had any luck getting prompt diagnosis and treatment. It is so frustrating you go to one doctor get test and then get sent to next dr. I was finally told 2 weeks ago I had rsd/type 2 causlagia and dystonia of left ankle and that I needed a movement specialist.When my dr called for an appointment they said they'd see me in 3 1/2 months. Do they not understand how painful this is and that prompt treatment is necessary. If I understand it correctly the sooner you start treatment the better.I'm on nuerotin, vicodin and it has helped a little. I was also put on crutches due to severe swelling in leg and pain. I thought this would end the color chages in leg since I was no longer walking on it,I found out it still changes colors when I stand. Several drs have acted like I'm crazy anyone elses input would be appreciated, I don't know if I should apply for disability or wait longer to see if they will finally fix it, I have another EMG on 10/20 and dr. appt10/31. I've had MRIS of brain,cervical,thoacic, and lumbar all normal. x-ray of hip and ankle fine except for it showing the curve in my foot. All blood work normal except elevated WBC given cipro in case I was getting cellulitis.

[RSD_AURA]

HI, I FEEL FOR Y0U, I HAVE GONE THROUGH THE VERY SAME THING. I HAVE RSD WITH DYSTONIA IN MY RIGHT FOOT AND LEG. I LIVE IN SC, AND THE LACK OF EDUCATION ABOUT BOTH OF THE DISEASES IS ALARMING. I WAS FINALLY DIAGNOSED, THE RSD IS MAINLY TREATED WITH SYPATHETIC NERVE BLOCKS ONCE A MONTH FOR 6 MONTHS, PHYSICAL THERAPY AND MEDS. ALSO TO FIND OUT FOR SURE THE TYPE AND IF YOU HAVE ANY DYSTONIA INVOLVED I WOULD ADVISE YOU TO CALL THE NATIONAL INSTITUTE OF HEALTH. THEY HAVE STUDYS AND PROGRAMS YOU CAN GET INTO. THERE IS ONE OPEN RIGHT NOW CALL THEM , THIS ONE IS TO DIAGANOS WHAT YOU HAVE AND TO FOLLOW AND TO BE A  CONSALTANT FOR YOUR REG. DR. THE PROTOCOL NUMBER TO ASK FOR IS 93-N-0202.  GO TO THE NIH SITE AND GET THE PHONE NUMBER. THEY WILL PAY YOUR A IR FARE. HOTEL AND FOR ALL YOUR TEST. I HAD TREMORS SO BAD, AND THE DR HERE HAD NO CLUE WHAT TO DO, SO MY DR FROM NIH CALLED AND TOLD THEM WHAT TO PUT ME ON AND IT HAS HELPED A LOT. I GO TO  EMORY IN ATLANTA FOR THE DYSTONIA, AND GO TO GREENVILLE FOR THE RSD, AND GO TO THE NIH, WHEN EVER THEY HAVE A TREATMENT AVAILBLE TO SUITE MY CONDITION. CALL THEM AND GET IN, IT CAN CHANGE YOUR LIFE, IT CHANGED MINE. UP TILL THEM , MY STORY WAS THE SAME AS YOURS. GOOD LUCK, LET ME KNOW IF YOU NEED FURTHER ASSISTANCE I CAN CALL MY DR THERE. YOU CAN EMAIL ME @ [email protected] YOU ARE THE FIRST PERSON I HAVE MET THAT HAS IT IN THE FOOT AND LEG LIKE ME, TO ME THATS THE WORST PLACE TO HAVE IT. THE DYSTONIA IS STARTING TO TURN MY FOOT AND IF THIS MED DOSNT WORK THEN THEY ARE GOING TO TRY BOTOX SHOTS. THE PAIN HAS GOTTEN TO THE POINT THAT I AM NOW SERIOUSLY CONSIDERING A SPINAL CORD STIMULATOR, I DIDNT THINK I WOULD EVER GO THERE, BUT.PLEASE EMAIL ME AND LET ME KNOW IF YOU HAVE ANY LUCK REACHING THE NIH OR IF YOU NEED HELP, OR IF YOU JUST WANT TO TALK TO SOMEONE WHO KNOWS WHAT YOU ARE GOING THROUH. MY NAME IS AURA, I HOPE THIS WILL HELP YOU, GOOD LUCK

[tider1701]

My wife has been diagnosed with RSD. We live in Asheville NC and there is a specialist in Greenville, SC about 45 mins. South of here.  We have been reading about how hyperbaric chamber treatments are helping people greatly with this disease.  Nerve blocks and opiods with Neurotin aeem to help, but there are many hyperbaric treatment centeres around the USA.

[mars38]

thanks for responding to my question.The problem is that since I keep being sent from one nuerologist to the next each one seems to diagnos themselves oftern ordering more test.This week I'm having another EMG of legs and I can't get into the dr.10/31 because he's on hospital rounds.From there it sounds like I'll have to be referred to a pain specialist,who knows how long I'll have to wait to get in to him. On the positve side since my nuerotin has been increased to 1500mg and I take vicodin every 4 hrs the pain has gotten better sometimes I can even tolerate a blanket on my foot now.I live in Ohio,just curious where you lived and what hospital took care of you. I'm glad that you recovered quickly and I feel that I will also when I finally get nerve block. One 17yr old girl in my community has it soo bad that she's confined to a wheel chair and having to go to a hyperbaric chamber because nothing else worked. Thank God we don't have it like that.Take care Judy

[sdp4314]

I had RSD bilateral legs after a car accident and I broke a leg.  My ortho noticed that my legs were red/hot and kind of purple and immediately sent me to a pain management doctor.  My skin was on fire and I was miserable. I took 1200 mg Neurontin, Elavil and Vicodin as needed.  What finally worked for me is I had a series of epidural blocks, done on an outpatient basis, where they blocked my sympathetic nerves.  After 4 of these my RSD is pretty much gone, however, I do have flare ups that I can control with OTC medications.  It's difficult to get into specialists sometimes I know.  Is there any way the doc that diagnosed it can call the pain management doc directly.  My ortho called right then and there and I was in the next day.  Of course I worked for his colleague and the doc he referred my to was his college roommate.  But, I do know that they can get things done when they want too.  I know you are frustrated and in pain, but hang in there because there is a way to knock it out.

Best of luck,
Shawn