So. I had an interesting conversation with pain dr. this morning. He feels it may not be CRPS but nerve entrapment. Gah. I asked him about this back in freaking January. He didn't want to test for it then b/c the nerve conduction test is complicated and painful, and he was hoping he would "just get better". Meanwhile he's lost months with possible wrong diagnosis. Although maybe I should be excited that CRPS may not be the issue at all, I'm very skeptical. He was diagnosed by 3 different doctors as CRPS. He had extra hair/nail growth, purple or red discoloration, different temperature in bad foot, burning, spasming, stabbing, shooting pain, insomnia, bone density loss, muscle atrophy, excess sweating, etc. etc. etc.

Oh, and by the way, he feels there's nothing more he can do for him. Really? Seriously? I had to ask where do I go from here. They suggested neurology and PMR. I can't get him in to neuro for 6 weeks, and PMR for 3 weeks. Gah. I need a punching bag. I'm trying to get the pain dr. to ask neuro to see him sooner. If not, I'll try to get pain dr. to do the nerve conduction test, if he does them.

No, nerve entrapment doesn't cause temp regulation dysfunction or color changes, or nail changes, etc.

Your doc doesn't have enough experience with RSD/CRPS.

Not everyone is a fan of Hooshmand, so I tend not to link to his website anymore--he's retired and some info is certainly outdated. But I do think he does a good job explaining the sympathetic and parasympathetic nervous systems.

link: http://www.rsdrx.com/WHAT_IS_RSD.pdf

I wonder if he meant nerve damage vs. entrapment. That would be type II CRPS, I believe, which would make more sense given his history.

Except nerve damage doesn't explain the nail and skin issues.

I would highly encourage you to look into inpatient programs for children with CRPS for him to attend during the summer, if there is any chance of your insurance covering it.

Actually nerve entrapment can mimick CRPS, it is a necessary rule out. Temp and color changes can definitely be caused by nerve entrapment as it disrupts the neurovascular regulation. A plastic surgeon peripheral nerve surgeon who does lower extremity reconstructions is the person who specializes in this. Even with an NCS that is negative there can still be entrapment of a minor nerve that either didn't get measured or that can be expected to have a low measurement because it is tiny. Some of the smaller dorsal nerves of the foot that go through the anterior ankle don't get tested but could still be symptomatic if damaged or caught up in scar.

so frustrating on the PM! what the heck?!

And the nail changes?

I wonder about that too. It is not mentioned that I know of in the mimicry cases. Though I wonder if blood flow that is dysregulated would contribute. Or there is just the plain old possibility that there is a nerve entrapment CAUSING the CRPS and it's a hybrid animal...

worth checking out either way

The pm nurse called me back and clarified, he doesn't have anything new to offer right now, but will talk to the neuro department and see if they can get him in quickly instead of waiting six weeks. The doctor will call me tomorrow to offer more information. So we shall see. It's just been a roller coaster week, I guess.