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I can't walk

It all started with back pain and then a foot drop in 20012. It took forever to see a neurologist because we had no insurance at the time because my husband and I just moved toColorado to help his parents with their "End-of-life Journey". They did blood work and everything was fine there, they did a MRI on my back thinking maybe lumbar or a disc problem but there was a slight encroachment but that was not causing foot drop. They checked for diabetes and I was not diabetic. The Dr. Gave me an EMG and discovered nerve damage but could not locate exactly where but estimated it was from my hip. He called it sciatic neuropathy with unknown cause. I received a foot brace that fit in my shoe and it helped a little. When we moved back home to Nebraska in 2014. My condition worsened. I started using a cane after a nasty fall where I really hurt myself. Now I can hardly walk at all without assistance. My balance is terrible and my anxiety level is through the roof. Right leg is very weak and atrophy has set in. Recently I saw a Neurologist and discovered my left foot was also starting to drop. They immediately started testing for MS. After the brain scan MRI WAS DONE THEY RULED THAT OUT. He did another EMG and then diagnosed NDLRN which is a rare type of neuropathy effecting your lower legs and feet. A autoimmune disorder or something. Spelled out (spelling?) Non- diabetic Lumbosacral Rediculoplexus Neuropathy. He prescribed a treatment of an IVIG. I have had two treatments so far. 3-day with 5 hours at a time intravenously. He thought I would see significant improvement by now but it has been very minimal. I am so frustrated because I am almost wheelchair bound. I was very inpependant before and self- sufficient and now I can't even drive or go anywhere by myself. I need a support group or something. What suggestions do you have? Will I ever walk again? If not, what next? Somebody please help me.
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987762 tn?1671273328
COMMUNITY LEADER
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
Helpful - 0
667078 tn?1316000935
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
Helpful - 0
11079760 tn?1483386130
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
Helpful - 0
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