Hi Ronda, I'm sorry to hear what you've been going through, i too don't know anything about Lumbosacral radiculoplexus neuropathy (LRPN) but i've found some information for you that i hope can help....
"The long-term outcome was determined in 42 LSRPN patients: two had become diabetic, seven had relapsed and only three had recovered completely, although all had improved. We conclude that: (i) LSRPN is a subacute, asymmetrical, painful and debilitating neuropathy of the lower limbs associated with weight loss, and we think it is under-recognized; (ii) recovery from the long-term impairments of LSRPN is usually delayed and incomplete and only a small minority of patients develop diabetes mellitus; (iii) LSRPN mirrors the diabetic variety in its clinical features, course, pathological findings (ischaemic injury from microvasculitis) and long-term outcome; and (iv) LSRPN should be set apart from chronic inflammatory demyelinating polyradiculoneuropathy and from systemic necrotizing vasculitis."
http://brain.oxfordjournals.org/content/124/6/1197.short
"Lumbosacral radiculoplexus neuropathy (LRPN) is a multifocal, asymmetric, painful neuropathic disorder affecting multiple levels of lumbosacral plexus, nerve roots, and distal nerves that emerge from the plexus. The disorder was first described in diabetic patients (DLRPN) and was later found to occur in nondiabetic patients as well. There have been debates as to the pathogenesis of DLRPN and LRPN. Recent detailed and extensive pathologic studies, however, have shown that the main pathogenesis is inflammation and microvasculitis affecting various components in the peripheral nerves, resulting in ischemic injury to the nerves. Even though studies on the natural history of this disorder have shown that the majority of patients recover within a few years after the attack without any treatment (although recovery is incomplete in many cases), it is a common practice, based on the pathophysiology and case series, to administer immunotherapy.
Preliminary data from a controlled clinical trial failed to show significant improvement in outcomes measured by neurologic deficits (as judged by the Neuropathy Impairment Score) but did show improvement in symptoms (pain and positive sensory symptoms). Choices of immunotherapy include corticosteroids, intravenous immunoglobulin, plasma exchange, or a combination. Pain management, physical therapy, and treatment of depression remain mainstays for managing this disorder."
http://www.ncbi.nlm.nih.gov/pubmed/20842573
*"Whilst this is relating the when diabetes is comobid i'd expect the prognosis would be slightly higher with diagnosed non-diabetic patient. "
Good functional recovery within 12-24 months is expected in 60% of patients with diabetic lumbosacral plexopathy, although mild weakness, discomfort, and stiffness often persist for years. Occasional relapses can occur."
http://emedicine.medscape.com/article/1935459-overview#a5
I don't think this condition is very common even in diabetics, there isn't a lot of current research specifically on non-diabetics but i did find a pdf with a long list neuropathy support groups that might be worth considering...http://www.pnhelp.org/files/5613/2901/2685/PCNAENews1211.pdf
I really hope something i've found helps!
Cheers.........JJ
We have no doctors on this forum. I know nothing of your condition. I just wanted you to know I read your post. It must be terribly hard to lose your independence. I have lost a lot of mine. First from MS then from cancer. I can still walk. I spend a good part of the day in bed.
Alex
I am afraid I have no answers for you. I just wanted you to know that you have found an incredibly knowledgeable and supportive community here. I know you will get some helpful suggestions & find others with whom you will be able to relate.
I am so very sorry for all you are going through.
Cheryl