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RE: RSDS

Posted by Mar on 3/09/03 at 15:48 (112350)

Can anyone who has been diagnosed with RSDS tell me what tests/symptoms/etc were used to diagnose that? Mar

Re: RE: RSDS

Pam B on 3/09/03 at 20:02 (112380)

I had a bone scan, xrays, and nerve blocks....with the block if you experience any relief of the burning pain or whatever type RSD pain you have....each time you have a block you should experience more relief that lasts longer each time hopefully putting it into remission with the blocks and meds.......alot of times the first block it is really hard to determine too much because, but there really is no single test to make a diagnoses with, what they do with you is called a working diagnoses by beginning the blocks........they also do a neurological work up prior to even doing a block.......they have to be pretty sure that you have it to begin blocks I what I understand......but that is a question that you should ask your doc........good luck :)

Re: RE: RSDS

Mar on 3/09/03 at 20:14 (112382)

Thanks Pam - my pain is usually not a burning pain and that is probably why the doc doesn;t think I have RSDS. Thanks for the info. Mar

Re: RE: RSDS

Tammie on 3/10/03 at 15:04 (112452)

I had Mri and cat scans and emg and the nerve testing in leg and lower back with the needles, they did the Mri for my brain to help rule out MS,different medications. I think it is sort of like a elimination of every thing else that they can think of. I had oddles of blood work done.

Finally several Dr.s agreed that it was rsd and they started the nerve blocks. I had no reactions to most of them but 2 showed a pink foot for about a hour.Very disapointed we all were. I would very much encourage if anyone thinks they may have rsd to see a pain management dr. they are very good and they know right what they are looking for,They also do not disbelieve when you tell them there is pain~.I have very kind words for my pain management dr. , I am now going to be working with 2 different offices of them.OUR goal is getting back the one thing I miss the most, going back to my work,being independent again!~

Re: RE: RSDS

Mar on 3/10/03 at 16:28 (112464)

Tammie -

Do you also have PF? Thanks for all your info. Mar

Re: RE: RSDS

Tammie on 3/10/03 at 16:57 (112469)

Yes , and I first had that surgery to my grief! then the second mistake I had was the tts surgery.And here I am with the dx of rsd. And it seems as tho most of the Dr.s I have seen (not the pod who did the surgeries)feel that it definetlay started somewhere between the first and second surgery by the things I stated and from my records. They were amazed that it could have been missed as it is not kept in closet or untalked about it .In fact they now call it CRPS to. Well it wont cange anything for me. But if anyone can be helped from my expierance I would be happy~

I dont toataly regret the surgery any more as I would have done anything to get rid of the pain , BUT I would have definetly given it more time and I would have gotton a pain dr. involved so that I might have had soem pain control whil I was looking and waiting it out.I would NOT have had the second surgery! I should not have had that at all!But again It is in past and I am working on finding so futor for myself and my body! As you see rsd is not only a foot, it affects you , your whole being. There is a very lot involved in rsd I learn more each time I visit my pain dr.s. I hope you do not have it but if you even think get to a pain dr. fast dont wait!

Re: RE: RSDS

Mar on 3/10/03 at 17:22 (112472)

Before it was diagnosed did you have pain in other areas of your body, or only the feet? Mar

Re: Tammie, hope it's not too late....

BrianG on 3/10/03 at 22:00 (112510)

Hi Tammie,

I have something for you. I think you know where I got it, I have sent you information from this web site in the past. Send me an e-mail if you need more info. I hope the statute of limitations didn't run out !!

BrianG

From the Net:

Reflex Sympathetic Dystrophy Syndrome (RSDS)
Reflex sympathetic dystrophy is a severe and debilitating condition that occurs when the nerves in the leg 'go haywire.' The syndrome is at times known by different names, including Complex Regional Pain Syndrome.
The condition can develop following any small or insignificant traumatic injury such as a slip and fall. Of course other types of foot, ankle, or leg trauma or surgery can ignite this complication. The exact cause is still unknown.
Early and aggressive treatment (usually before the three-month period) can result in complete remission of the symptoms. However, if the diagnosis is not promptly made (i.e., within three months), or if it is not treated in a timely manner, then the reflex sympathetic dystrophy can become severe and debilitating to such a degree that stage III disease can evolve into permanent disability.
It is not medical negligence to develop Reflex Sympathetic Dystrophy following injury, surgery, or other medical treatment. However, failure to timely diagnosis RSDS (within the three month period), failure to refer to a Neurologist or a Pain Clinic, or failure to properly treat the condition may in certain instances constitute medical negligence.
WARNING: There have been cases reported where some practitioners have used the diagnosis of RSDS solely for the ease of diagnosis and for reimbursement purposes, when the patient did not, in fact, have RSDS. Such action may in certain circumstances constitute medical negligence or even medical fraud

Re: Tammie, hope it's not too late....

Mar on 3/11/03 at 05:15 (112517)

So does this mean that RSDS would be detected by a neurologist through a nerve conduction test? If the nerves in the legs behave normally in these type tests, then RSD would not be a probability? Mar

Re: Tammie, hope it's not too late....

Max K on 3/11/03 at 23:46 (112626)

A friend has RSD, so I read about it a little bit, and I learned that 'there is no definitive test that diagnoses RSD beyond a doubt and the tests that do exist miss many people who have the disease':
http://home.ptd.net/~paulbarb/diagnosis.htm
As far as treatment for RSD, some patients have had success with Ketamine treatments (scroll down to read Katherine's success story and Cheryl Lynne's success story):
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=82\

Max