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reflex dystrophy syndrome

Posted by Terry on 2/19/03 at 13:29 (109846)

I've been to 4 Dr's, And like many of you can't get a concises about what I have. One family physician said it is classic reflex dystrophy syndrome. This seems worse then tts. I seem to have the same symptoms as many of you. I was wondering have any of you also been told you could have rds?

Re: reflex dystrophy syndrome

Ed Davis, DPM on 2/19/03 at 15:56 (109869)


Please describe your symptoms in detail.

Re: reflex dystrophy syndrome

Terry on 2/19/03 at 20:45 (109916)

My symptoms include total numbness in the bottom of my 4 toes. My big toe has total feeling and the half of the sole of my foot under my big toe has feeling. Actually it's slightly super sensitive. The outside half of my sole including my heel is also numb.
The pain I get is intermittent and I would describe it as stabbing. It's just below my toes at times and other times its on the outside half of my sole and at other times it's on the inside of my sole half way up.
At times it just goes away. Incidently if I rub my big toe it goes away! And if I ice my ankle under my ankle bone it goes away. So I wear an ice bag most of the day and night.
On a 1-10 scale it's a 6-7 but has been diminishing due to 900mg of neurotin. I have good strength in my toes even though they are numb.
I have trouble sleeping.
Also, have you ever heard of MR Neurography? I am scheduled to see a Dr. Aaron Filler who used to head UCLA neurolgy on March 17th. They indicate MR Neurography is an enhanced MRI with 3D imaging that can specifically see nerves and that they have the capablity to see the posterial tibial nerve at the tarsal tunnel. They also indicate they can also distinguish between damaged nerves and healthy ones.
I really appreciate your thoughts on this.

Re: reflex dystrophy syndrome

wendyn on 2/20/03 at 07:18 (109975)

Terry - I have reflex sympathetic dystrophy (I think that's what what you mean).

Fortunately, mine seems to be in remission more and more these days.

I've read that ice is very very very bad for RSD. Did you tell your doctor that you're icing?

Re: reflex dystrophy syndrome

Ed Davis, DPM on 2/21/03 at 19:08 (110240)


MR neurography is a very new technology. Unfortunately there is not a great deal of information out there concerning its successes and failures.
Considering its potential promise and the fact that it is non-invasive I feel that it is worth a try.

Your description is more supportive of a TTS diagnosis as opposed to RSDS.
Are you experiencing any color or temperature changes in your foot?

Re: reflex dystrophy syndrome

Marty on 2/22/03 at 11:49 (110330)

Have you have any tests done to this point?

Blood and a Nerve conduction test is where I would start. Out of the 4 doctors you have been to have any of them been podiatrists?

Ask the neuro your going to see in march if he thinks it could be tts, in the mean while if you haven't see a pod too.

Re: reflex dystrophy syndrome

Terry on 2/22/03 at 13:15 (110352)

Thanks for talking the time to provide some insight into my condition. I will post to the thread my experience with Dr. Filler and the MR neurography. Also , I'm kind of encouraged to think that I do not have RSD.
Thanks again,