Hey you guys, I'm new to this crowd. I had my first visit with a pain specialist a few weeks ago. I was sent to him after a botched knee surgery and suffering a DVT from the surgery, which led to Post Thrpmbotic Syndrome. Upon examining me initially, he noticed hair loss , loss of feeling, and major atrophy in the affected foot and leg. He then told me he suspects RSD, and then schedued me for an nerve tes, an EMG I think, for this week.

Okay, so after reading up on RSD and that there is no test to diagnose it, and that the doctor can only diagnose it through physical examination/symptoms experienced, I can't help but wonder what the test this week is for. But primarily, I've been circling around one question in particular: If my doctor suspects RSD, does that more or less mean that I do in fact have it, more or less?

Thanks in advance.

They may be doing the test to exclude out any other possible cause, like a nerve entrapement or other nerve issue that the emg could detect.

You are correct that rsd is a clinical diagnosis, but it's usually only made when all other possible causes have been excluded, so that's likely why your doctor is ordering the test. There is currently no test that can show positivly that one has rsd.

If you do have something like a nerve entrapement then it's usually something that can be fixed with surgery so that would be a good thing. If it does turn out that rsd is your diagnosis, aggressive treatment is neccesary to try to put it into remission. The odds are the best when it's treated in the first 6 months to year of injury, and physical therapy and keeping moving even though it hurts is really important to avoid the permanent damage that can occur with rsd. It SUCKS! And it HURTS. You've got to learn how to push yourself, but not hurt yourself too much.

Someone told me life with rsd is like living on the edge of a sharp knife. You've got to balance yourself - do to little excersize and you'll hurt yourself, do too much and you'll hurt yourself, and everyones knife has a different blade. You've got to figure out how sharp your blade is and figure out how to balance on it . . . And your blade can change each day. It's tough, so you've got to be strong, but you will find that you are a much stronger person then you may have thought you were.

This place is a wonderful place to come for information and support, or a place to vent your frustrations, get advice, or just find some people who can understand what you're going through. It can really be an invauluable resource when you have a question or just need someone to talk to that knows what it's like to live with rsd.

how is an emg done? I've heard that they stick you with needles and it is very painful. I need to get one as well...is this true?

Well, an EMG certainly isn't up there on my list of favorite things, that's for sure, but I've had worse too.

As my orthopedist is fond of telling me whenever I ask whether something is going to hurt, "What you're about to feel is nothing compared to all you've already been through!"

I think it partly depends on where you're having the EMG and what your injury is, to be honest. It's a good diagnostic tool though, especially if you're showing some deficiency, so they can track your long-term progress.

Here's hoping it's "just" an entrapment. Please keep us posted.

I have had 4 EMG's before I realized they most likely will show nothing on them. They are very painful also. Mine were done to diagnose Thoracic Outlet and every idiotic Neurologist I had thought if it didn't show anything then there wasn't anything. I don't know what kind of Dr. you are seeing but I would hope he won't be like those I've seen. I will say too it can cause a worse flare for sure. The ones I had did. I finally said never again on EMG's.

Hopefully it will not be RSD that you are dealing with. If it turns out to be, learn all you can about it and pick and choose what treatments you will let a Dr. do. Pick and choose your Drs. too, no matter how many you have to see.

Welcome to the forum.

Ada

Since I probably have neuropathy now, an EMG would be a test for that. I discussed it with my PM doc at Clev Clinic last week. She said she never recommends them to anyone with RSD. And, she said it won't affect the outcome. Not like the would find a broken bone or something that can be fixed. EMGs just confirm diagnosis of some things. Maybe it's different if you have RSD from a cut nerve or something.

I don't want to scare you, but my EMG was one of the worst experiences of my life. On the day that I had it my leg was really dry and scaly, so the adhesive to the electrodes wouldn't stick and they came out with a inconclusive results...the next one was still inconclusive and I refused to have a third one. It hurt soooo bad and you could just look at my leg and see the mottling and swelling, hair growth..the whole nine yards.....

I got my diagnosis by process of elimination because I was born with Cerebral Palsy and they thought all the symptoms came from that. My RSD started after a bout with a serious internal MRSA infection. It took over a year and a half and about 5 neurologists until my PM doc just tooj one look and said beyond a doubt I had RSD. I was treated like crap until I found him and and he works along side of my GP and they are starting to get it right after 2 years. I am in the process of getting SSDI and I am waiting for my date for the judge.

In the meantime while trying to get my diagnosis my RSD has been spreading, so each appt for SSDI I have a new symptom....I almost have my med "cocktail" figured out so that I can function as a wife and mother and a new grandma. This is the only thing that I have been asking for. I know that I can't work my job as an autism mentor, which I have been doing for 24 years, but I try to stay positive and try to find out what it is that will make me learn to live with this crazy disorder.

Good Luck with the EMG and I hope it goes better than mine
God Bless,
Cindi

My CRPS was as result of a shoulder arthroscopy and resultant brachial plexus damage. Numerous issues resulted, one of which was near anesthesia of much of my affected shoulder, arm and hand. I couldn't feel most of both of my EMG's and over several areas, didn't even know when the neurologist put in and took out the needles! Weird.

Anyway, good luck!

Thanks for all the replies, everyone! Holly, the problem with getting it into remission, if in fact I do have RSD, is that the injury happened over a year ago. So I guess I'll know more after tomorrow. Will let ya'll know what happens!

There is a major disconnect here.....why has 1 year gone by between the onset of symptoms and a presumptive diagnosis of RSD? Quality care (non-HMO/NHS style) should not have allowed this! Makes me so dang mad!!!

Also, this sounds a lot like a similar situation with Allen where a vascular injury led to nerve trauma, consequently, CRPS.