What type of doc made diagnosis?
 

For those with a formal diagnosis, what type of doctor finally made the determination? What tests were done?

Hi Busymom
 

I went to an orthopedic surgeon, to inquire about fixing my ankle. After discribing what I was feeling, he said I have some kind of RSD or PN in the ankle, foot and calf...no surgery. It was later confirmed by a physiatrist, a pain specialist who treats at a cellular level. I had no test to confirm it, as I already have medicare. I don't know if having a formal test would be worth it to me, just to confirm what two doctors suspect. I am not sure how other people discover it, or have it confirmed. I know that to get some insurances you have to do some tests. ginnie

Ginnie was a little luckier than I was, but I was still caught relatively early: at least by the standards of 2001. I started having exceptional pain while my ankle was cast, while my ortho had the sense to refer me to a kindly old gent who was considered a founder of pain medicine, he didn't have the sense to tell them to immediately get me out of the cast, but instead doubled my dose of Vioxx to 50 mg/day. It was only a couple of months later, when my internist - looking for an answer - sent me to a rheumatologist, who ran his battery of blood tests, all of which were normal, but who then sat me down and gave me the tentative Dx of RSD.

The old pain doc saw me a couple of days later and I got my first LSB under fluoroscopy, with no change of any kind. He repeated it a week later, but the second time did it bi-laterally, and WHAM: 10 days remission! That, of course, was the "good news" . . .

I was finally diagnosed by pain management doctor after a "successful" nerve block. Last under a day..

I had gone through- three ortho docs, a neuro, gp, pt. before hand.

I had pain starting after break last august. Casted, was "healed" so he let me go. Always had pain. Come February i had been dispatching for a couple months and couldn't take the pain any more. So went back to doc, he said i had dequervains, did surgery (wich he only made my tendon pop in an out now too) made is 50 billion times worse. He said pain was normal post op. sent me to pt. 6 weeks later still awful, transferred me, and then i kept getting passed to someone else (each saying it might be rsd) . so i decided to go to pm on my own, and he scheduled the block, and bam diagnoses. Now have a new pm/neuro doc, who also agrees.


So..thats my experiance with dx

Is a block necessary for diagnosis? Sounds very scary to me, especially to put a child through. Thanks for sharing your experiences.

Sooooo similar! Now I have this hideous dequervains scar. Ugh.

I was seeing a wc dr, he sent me to an ortho, ortho did the DQ surgery and lots of PT, didn't help, changed drs, he did a EMG with a neuro, still no diagnosis. Then I started with a new primary dr for wc and she immediately said, "I think you have CRPS." She sent me to a PM, Neuro, and Ortho, all three said "probable" and scheduled me for a Stellate Ganglion block, emg, and bone test - after the block my diagnosis was changed to "CRPS of the right upper extremity." Dr. Prager was asked to confirm, he did a block, and my diagnosis was confirmed.

I have had 4 blocks...the first three were with some kind of meds that made me loopy, didn't hurt at all. My 4th block was done by Dr. Joshua Prager and he doesn't believe in any anesthetic for Stellate Ganglion Blocks, so done under fluoroscopy, I had a block by him, and it was fine, it pinched for like a second. It was a better block than the ones done under anesthetic too. Getting the IV was the most painful part of any of them.

one look by stand in Head Therapist after 2 months unfortunately she then put me on 2 of the worst possible treatments so when I finally got to see a specialist 10 months later he said they had caused so much damage and delay there was no hope of remission

Was seeing an ortho doc who sent me to foot/ankle surgeon for possible repair. The foot/ankle surgeon suspected crps and sent me to a PM. PM did 2 LSB with very, very limited success. He wasn't convinced that I had crps because "everyone he saw with crps had allodynia". Sent me to a neurologist who examined me and said, yes, crps. Went to a new PM who did a biopsy (didn't want the EMG). Biopsy was positive for crps and the rest is history.

"Good news"...oh my. I've read some of your posts and I can see you've been through so much. You are an inspiration and a good role model.

I had a contusion on my shin after having a varicose vein removed from my right calf just over 2 mos. ago. I was put under general anesthesia for the surgery so I wonder what happened. Surgeon says "I have no idea..you were placed on your back, just like the 700 other procedures like this I've done, and your shin was never touched." I'll never know I guess. Something "touched" it to say the least. The surgical areas healed nicely but the shin/leg pain persists and is getting more severe and spreading up and down my leg (knee is now stiff).

I was referred to a pain management practice that's literally in the same building and under the same company as the surgeon's practice. 1st visit there I was told by a physician's assistant that I likely had rsd/crps just going off of the symptoms and answering her questions. So, the next week I had 3 lumbar sympathetic blocks. With all 3 of them, I experienced warmth and pain relief for several hours. They had me see a pain specialist physician who then informed me that since the blocks were "unsuccessful", I don't have rsd/crps. I don't want to have it...who does? But I read that unsuccessful LSBs don't mean that one doesn't have rsd/crps. My diagnosis is now simply "pain". Seriously. I have most of the common rsd/crps symptoms unfortunately. The pain is so bad and this pain specialist is taking me off of low dose narcotics all together. Neurontin and Lyrica both left me with horrid side effects and I can't take them. I'm just wondering if blocks that reveal that pain is sympathetically independent vs. sympathetically mediated are an automatic reason to rule out rsd/crps?

Thanks fmichael and to all of you.

I had and emg and mri too before diagnoses. The emg, was awful.

My 2 sympathetic blocks were not successful either. 2 lsb's, 2 weeks apart. The first one did not give me any warmth. The 2nd gave me warmth but my pain actually increased. My initial PM felt I didn't have crps because of this but he referred me to his partner for a SCS. Sometimes I think it is best to change groups and get a broader picture. I had 3 specialists tell me I have crps and 1 (my initial PM) doubted it. Mine was finally confirmed with biopsy done by a much more experienced PM. My initial PM didn't have the breadth of experience to know that one can have sympathetic independent pain (SIP) AND crps. From what I understand SIP crps is a bit more difficult to get into remission. Good luck.

Thanks to all who are sharing their experiences. The more I read, the more scared I get. I also see there is no definitive test and have read (other places) that these blocks can actually make things worse. I don't know what we will do, as I don't want to put my daughter through unnecessary procedures. And the EMG? That sounds awful!

Hello busy mom
 

I did not go through the emg. didn't want to put myself through that. A neuro didn't say I had to either. I would not want to subject my child to that particuar test if I could help it. Sometimes I think a dx can be made without that test as it was for me. I wish your daughter all the best. ginnie:hug:

after 4yrs of this crap my epilepsy nuero made the dx. after going over all my sympthomes and saw my arms and touched them.

The EMG was by far the most painful test I had done. All the others were just eh...not that bad, especially not compared to actually HAVING CRPS.

First my orthopedic Dr. mentioned something like this, then my neurologist said to remember the name.they then got me a nuclear bone scan.. then 1.5 yrs later a tri. phase bone scan. they used both tests to compare . and they found that my lower right leg was virtually non existent on the triphase test where as a year and a half earlier the found bone bruising, tumors, and multiple pockets of liquid..I cant remember the names of it. that along with numerouse mri,s ct scans, and color changes my orthopedic, neurologist, vascular surgeon, spine specialist gave me a positive dx of RSD/CRPS. the I went to a Pain management Dr. and he did a temperature test of some sort..using a laser machine .. it measured temperature differences in each limb. and he confirmed DX.. now just a couple of months ago. a physical exam done by the Insurance medical examiner re-confirmed a severe case of RSD/CRPS.. you can be sure that the insurance company was not happy with that ..

Mine was my pediatric orthopedic doctor. I was 14 at the time, so I was still able to see the pediatric doctors. He knew me since I was about 6 or 7 from previous injuries from gymnastics (I was an accident-prone gymnast...imagine that). He dealt with my previous two breaks when I was younger, so he got to know that I was able to bounce right back into gymnastics pretty easily. Anyway, after I broke my foot, I went through the whole x-ray and cast deal. After the cast came off, I was given that camel walking boot thing and my doctor said that he trusted me, but just work on weaning off of the crutches first, then out of the boot. When I felt ready, I could go right back into gymnastics. Well, weeks passed and I was still on crutches because my foot just felt awful (RSD kicked in...it started when I was in the cast, but escalated after...). I could not seem to get myself off the crutches. My coaches at the gym noticed that something wasn't right since I always jumped back from injuries. My doctor took notice of it too since he knew I always bounced back. He did an MRI of my foot and then did bloodwork to rule out RA. He also had another RSD patient who was 3 years younger than me, so he was definitely familiar and didn't need to do any additional tests. I guess I was really lucky in a sense since he was familiar and didn't go through the whole trial and error. However, it took a few months after the onset of the RSD for me to officially be diagnosed with it.

Long story short I guess, an MRI, bloodwork, and general observations and manual tests were done by my pediatric orthopedic doctor to diagnose me with RSD.

I slipped on ice on the sidewalk on my way into work so all of my care has been through worker's comp. I hit my knee when I fell and was originally off work for 3 weeks. I worked then for 4 months all the while fighting to get an mri. When I finally did, it came out clear, with just a severe bone bruise. I had been working with a very long hinged knee brace the whole time. Since my knee was hurting worse and worse and my ortho doc noticed some discoloration on my knee, he said he thought it could be crps. He took me out of work in the middle of June. Luckily, I had an independent medical examination by worker's comp a few days later and their doctor agreed. From there I had a bone scan and was rushed to the head of the waiting list at the pain clinic. Also since I also have fibromylagia, worker's comp was betting on my pain coming from that. On my first visit with the pm, he diagnosed me with crps. I have had 5 lumbar sympathetic blocks, all of which lasted about 12 hours. My doc said the blocks DO NOT diagnose crps. He also told me this was not Fibromyalgia. So, even though I've been through alot trying to get diagnosed and treated, really it hasn't been that long considering I was only injured last Feb. Now I am going Nov. 12 for my first consultation with the doctor who does the spinal cord stimulators, so that may (or may not) be my next step I have not had any probems with workers comp since my diagnosis.

the first time I heard the words rsd was from a podiatrist. The orthopeadic doctor did not want to hear it every time I told him that I was still in pain and it was getting worse. Thats when I ventured out to the (good looking) podiatrist. After my second surgery I was finally sent to pm.