katric,
I'm so sorry about your brother! GB is a tough one, and then CRPS, this is a tough row to hoe.
You need to find doctors who are well versed in dealing with the RSD/CRPS. A university hospital with a good neurology dept is a good place to start. Neuro's can be funny though, big ego's. Call, ask for the 'Cheif of Neurology', and give him a short interview on the phone. If he can't give you five minutes, he's not your guy, nor does he have anyone on his staff.
This may require more than one call..

Go to
rsdsa.org
they have a doctor finder by zip code, but the calls are the best way.

We have a Triangle of care for CRPS, and one of those is a good neuro/pain doc to handle the medications. It sounds as if this is still a weak spot.

Next, psych care! And, this seems as if it's being completely ignored! Maybe your mom should go too, but he needs a psychiatrist that deals with chronic pain patients. (usually, a good pain doctor will know one of these).

Then, excercise. This is a 'use it or lose ' it disease. He's got to get his pain under control, so he can still move around!

I've had this for 28 years, and it's full body, along with a good handful of other ailments.
Good care is tough to find, when you do, respect it. I urge you to take these steps starting with a good knowledgeable doctor who knows CRPS! There are specific steps that can be taken, to hold off it's spread for as long as possible, hopefully forever!

I'll keep your brother, and family, and yourself in my prayers! I too, think it's great that you are looking out for your brother!

Pete

Dear Katric -

This sounds like an unbearable nightmare for your family. I join the others, know that we're thinking of you.

First off, where does your brother live? We might be able to make some suggestions. And while I agree with Pete's comments, you should know that some university hospitals are better than others. The University of Washington (Seattle) is to be avoided like the plaque. And just where I live in LA, the pain program is much better at USC than UCLA, even though UCLA has significantly higher ratings overall, and is one of the best neuroscience centers in the U.S.

The other thing is that a GB/CRPS combination is not unheard of. Certain viral infections often lead to a susceptibility to CRPS (RSD) and Guillain-Barre is on the list, although Human Parvovirus B-19 apparently tops them all. (References available upon request.)*

And for what it's worth, "mild cognitive impairment" (which I've got) is common in CRPS, see, The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin. J Pain 2009; 25:273-280 http://www.rsds.org/pdfsall/Schwartz...lexanderGM.pdf AND Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al, J Int. Neuropsychol. Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf

That said, I know of nothing specifically linking CRPS/RSD with any form of dementia, and checking the massive records of published medical articles maintained by the NIH, called PubMed, and accessible at the upper-right of every NT page, came up empty. And searches under both "Guillain-Barre dementia" and "Guillain-Barre Alzheimer's disease" were essentially unproductive as well, a few articles noting commonalities in treatment etc., but nothing linking the two as such. So I don't know what to suggest on that front.

Clearly, your brother needs expert medical care, for which the VA is not so hot, at least on CRPS related issues. (For active duty troops at Walter Reed, that's another story entirely . . . )

Mike


* The symptoms of B-19 are - at least in adults - relatively non-specific, so that a diagnosis is rarely made, except through immune assays. See, generally, http://en.wikipedia.org/wiki/Parvovirus_B19 When I first saw an article on this, I was tested for B-19 antibodies and my IgG levels (showing antibodies to a past infection) were very high, while the IgM test (antibodies to a current infection) came in at zero.