Non-diabetic lumbosacral radiculoplexus neuropathy

@bwin11 this should help explain.

- Intravenous Immunoglobulin Therapy (IVIg):
https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy

Thanks

I have LSRPN and am getting steroid infusions. I am wondering too if anyone has received IViG and the results you achieved. Thanks

I have neuropathy in both legs n feet mostly in one side from a fall. I am immune deficiency I get Ivigg every 4 weeks tried self infusion doesn’t feel as good. I started this several months later maybe 2 yrs noticed numbness worse. But now Ivigg makes better! Only seems to last 3 weeks.then I start feeling not so good till time for my Ivigg I have been on this 6 yrs but neuropathy getting bad some days at nite in bed worse getting up to p sometimes I am so numb in feet can’t feel floor! I have a ft injury creates unbalance an pain an it’s also my numb ft an leg side! Swelling to. But the Ivigg is easy to get Medicare covers it!
I miss driving my self being single has made my life change
Not good! I use Cbd it works for me better then big drug mfg !

Hi
I have just joined the support group. I have been diagnosed with a plexus and leg neuropathy in the last 6 weeks, all in hospital. I am in New Zealand. There have been no comments on your chat line from either New Zealand or Australia with patients in the area. Anyone out there? Would like to connect and explore experiences and issues if any. Getting a bit lonely otherwise

Hello @gvincent100, Welcome to Connect. I'm sure we have a members with neuropathy from both New Zealand and Australia. Barry Sheales @user_che214927 started this interesting discussion that you might find interesting if not helpful:
-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/.

Do you mind sharing a little more about your symptoms and any treatments you've tried?

How do you get LSRPN diagnosed? MRI? Is there stenosis (impingement on spinal cord or dorsal root ganglion), scar tissue, inflammation, autoimmunity or tumor(s) in the lumbosacral region? Have you fractured any of your lumbar or sacral vertebrate? Do you find that it worsens with rapidly falling barometric pressure? Does the pain in your lumbosacral region (tailbone and buttocks) happen at roughly the same time as pain or numbness in your legs/feet? Have you had your genome sequenced to determine whether there is a genetic predisposition for chronic pain (including lumbosacral pain)? I have lumbosacral pain and very painful neuropathy in feet. I fractured my L4 a number of years ago during a seizure fall. The pain worsens with falling barometric pressure. My genome sequencing shows I have two mutations that affect mitochondrial function, which means that the energy demands of my cells are not being met because my mitochondria are slowly self-destructing. But the doctors have not ruled out lumbosacral radiculopathy as a cause of my neuropathy. I haven't tried IvIg yet because we haven't run every single test for autoimmunity. Any feedback, especially on methods of diagnosis for LSRPN, would be appreciated. Thanks.

Hi Margaret10.

To be honest I am very new at all this. I am still in hospital after my initial diagnosis of ND-LSRN. I presume from the detail of your questions you are a member of the medical profession, so I am working with my consultant to give you accurate answers, hence the delay in reply. I will try to answer your questions in pieces.
Q - How do you get LSRPN diagnosed? MRI?
A – An MRI, Lumbar Puncture and EMG were done and the Lumbar Puncture showed raised proteins and the EMG confirmed the diagnosis of LSRPN.
Q - Is there stenosis (impingement on spinal cord or dorsal root ganglion), scar tissue, inflammation, autoimmunity or tumor(s) in the lumbosacral region?
A – MRI did not show any impingement of the nerve roots and any changes on the spinal cord, systemic autoimmunity was ruled out with blood tests and so was cancer with Lumber Puncture not showing any malignant cells.
Q - Have you fractured any of your lumbar or sacral vertebrate? Do you find that it worsens with rapidly falling barometric pressure? Does the pain in your lumbosacral region (tailbone and buttocks) happen at roughly the same time as pain or numbness in your legs/feet? Have you had your genome sequenced to determine whether there is a genetic predisposition for chronic pain (including lumbosacral pain)?

A – Margaret I will answer this in pieces as applies to me and then try and do an overview.
If this does not make sense please come back and question more.

Q - Have you fractured any of your lumbar or sacral vertebrate?
A – Sorry no, I have never broken any bone in my body
Q – Do you find that it worsens with rapidly falling barometric pressure?
A – I presume you are asking if the weather effect’s my problems?
A - Again a no I have never noticed any impact of barometric pressure on my body
Q - Does the pain in your lumbosacral region (tailbone and buttocks) happen at roughly the same time as pain or numbness in your legs/feet?
A – On this one I have to answer I really don’t know. It is possible, my legs do suffer pain and so does my lower region but I am not sure if that is just from sitting around or other reasons. This is a bit of a please see below comment.
Q - Have you had your genome sequenced to determine whether there is a genetic predisposition for chronic pain (including lumbosacral pain)?
A - Again on this. never had my genome sequenced, not even sure what it is.

I had a journey of diagnosis. First a CT scan and Lumbar puncture. This was followed by a nerve conduction study of approx. 3 hours (painful and in-depth) and then an EMG study on arms and legs. This was followed by an MRI and all within 48 hours.
The diagnosis was clear and given to me within 2 days by my neurologists. My pain is easing with the use of Methyl Prednisone delivered IV. I had 5 treatments in 5 days then three doses in five days for two weeks. I believe I have another approx. 8 treatments to go and then will look to get home and restore some quality of life. While I have fallen twice I have not broken anything or had long term injury. At 69 I feel I still have a lot to recover from and learn about this challenge.

In trying to understand the medical information I have been given and the journey I have travelled in the last 8 weeks please bear with me if this does not make full medical sense.
In discussions with my consultant we believe there is a much larger number of patients suffering from ND—LSRPN.
We have heard of numbers varying from 2 in 100,000 to 9 in 100,000. Applying that to our part of the world it could be as small as 100 in New Zealand or up to 2,250 in Australia. We are keen to find out possible patient numbers and explore ways to assist them.
The following abbreviated items may be of interest
“NSVN with proximal involvement
I have I think NSVN – (Non systemic Vasculitic Neuropathies) affecting the distal and primal limbs with proximal involvement – referred to as Non diabetic lumbosacral radiculoplexus neuropathy.
It appears to be a small group with this condition.
Extensive clinical overlap and variability exists between patients with proximal and distal NSVN. The only large study with proximal involvement was as many as 57 patients with ND-LSRPN. In 2010 this was compared to 48 patients with NSVN. Many phenotypic features were similar but proximal lower limb weakness weight loss and elevated CSF protein levels were more common. Four of the 48 patients had LSRPN that was restricted to lower limbs.
Consensus was that ND-LSRPN is a form of NSVN characterized by proximal lower limb involvement, weight loss and microvascular damage. The condition was not classified as a clinicopathological entity.
Post Surgical Inflammatory Neuropathy
PSIN is a self limited acute neuropathy that emerges within 30 days of a surgical procedure in the absence of a trauma to affected nerves. The condition must develop after the immediate post operative period or if it develops within this period involve nerves from the surgical field. Largest research is 21 patients, median delay 2 days, Almost all patients had combined motor and sensory deficits, 85% had pain. Most common patterns were bilateral lumbosacral radiculoplexus neuropathy and sciatic neuropathy .
All patients were monitored and improved.
A combination of clinical and histopathalogical findings and treatment responses suggest that post surgical inflammatory neuropathy is a self-limited sub-type of NSVN triggered by surgery.

Hi @gvincent100, your diagnostic path sounds a lot like I’ve (except that I have some extra symptoms): lumbar puncture with elevated proteins, clean-ish MRI, EMG diagnosis of lumbar radiculopathy. My docs seemed to think the clean MRI ruled out the radiculopathy, however. They were looking for impingement of the nerve roots. The spine surgeon wouldn’t even see me after he reviewed the imaging.

My extra symptoms are perhaps more consistent with SFN. I could very well have both.

Your diagnostic journey is much like mine. Initially, we found a mass at the S5-L1 space. When that was removed, my condition improved. A few years later my symptoms returned also with back pain and sciatica. Again I had surgery to fuse L1 through L5. Only short lived relief. A few years later I again had back surgery that necessitated redoing my previous fusions because my bones were weak and not holding the hardware. The surgeon had to fuse now up to T11. All of my back related issues are resolving but not the neuropathy. There has been the question has all this injury to my spinal cord caused the neuropathy. No one has the answer.