Dear Lindkaye -
What a tough double whammy! I am so sorry to hear about your situation. At least it sounds like you're under good care on the MS front.
The only information I can find on CRPS/RSD and MS is a recent article written by Dr. Robert J. Schwartzman, considered by many (for many years) to be the leading RSD specialist in the county. It's called “Prevalence of Complex Regional Pain Syndrome in a Cohort of Multiple Sclerosis Patients.” Schwartzman RJ, Gurusinghe C, Gracely E,
Pain Physician, 2008;11:133-136 (multiple sclerosis patients are at a higher risk of developing complex regional pain syndrome than the general population). I've attached a copy of the article for your reference. Although noting the limitations of the study due to it's small size, the authors offer one interpretation that might be valuable:
To date, only one case report addresses CRPS as a possible complication of MS. The authors suggest that the formation of a syrinx, the result of a degenerating plaque, disrupted the sympathetic flow in the cervical cord leading to CRPS. Recent experimental and clinical data supports the hypothesis that neuropathic pain caused by peripheral or central nervous system injury can be initiated and maintained from activation of immune cells and their inflammatory mediators. We suggest that the higher than expected incidence of CRPS in MS patients is related to demyelination of spinothalamic or other pain pathways rather than both illnesses sharing a common immunological pathogenesis. [Emphasis added; citations omitted.]
Of course, in this study, as well as the prior case report the authors referred to, the RSD was treated as a complication of the MS, whereas in your case, the RSD came first.
You mention that your neurologist hasn't had prior experience with a patient with both illnesses. You might want to show him or her this article with the suggestion the s/he contact Dr. Schwartzman. For what it's worth, even though I live in So. Cal., I saw him a number of years ago to see if I could go to Germany for the "high dose" ketamine treatment, but that didn't work out due to complicating medical conditions. That said, I know the man to be a gentleman as well as a scholar, who wouldn't hesitate to take your doctor's call. I'd give it a shot.
Good luck,
Mike