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Lupus and Nerve Compression Syndromes
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jujubeee714 posted:
I have SLE and have had PN for many years, which has now turned into compressions, tarsal, unlar, radial, carpal, tn, on and gn. I also have cervical spine issues. WILL a nerve biopsy tell me what exactly the damage is to my nerves so I know if spine surgery would be helpful? I've had 3 opinions spine surgery is necessary. THanks, Julie

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jujubeee714 responded:
Just want to add that I am concerned that having the spine surgery would do nothing for the compressions if they are caused by lupus. Will a nerve biopsy give me the answers I need to make an informed decision? I would hate to have the surgery and then STILL keep getting compressions..Thanks, Julie
 
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lupylisa44 responded:
I am going to get an MRI on Tuesday for the same thing! Have had losts of neck issues the past several years including bulging disks, osteophytes, spinal stenosis and now cervical dystonia (torticollis) I have had a ton of procedures and so far none have given relief. They include facet injection, RF neurotomy, epidural, diskectomy surgery, botox,etc...The pain is unbelievable! I feel for you!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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R Swamy Venuturupalli, MD, FACR responded:
Nerve biopsies are useful to rule out vasculitis or an autoimmune cause of the neuropathy. In your case, the EMG nerve conduction has likely pointed to a spinal compression of the nerves and thus you might have been advised to undergo spine surgery. Given that you have lupus, it is possible that lupus could be causing the neuropathy. Usually, an experienced neurologist will be able to tell whehter the neuropathy is from lupus or from spinal nerve compression. However, occasionally, this cannot be easily determined and a nerve biopsy might be helpful. Please note that nerve biopsies can be falsely negative as we sample only a small nerve that may or may not be involved.
 
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jujubeee714 replied to R Swamy Venuturupalli, MD, FACR's response:
Doc and Lisa! Thanks so much for the reply. To complicate the situation, my neuropathy (in extremeties) started over ten years ago, long before the lupus dx and before having any spinal issues. Can spinal issues also cause the tarpal tunnel? Does that make sense? Will an ANCA antibody test help?

And to Lupylisa, my sister in arms here, lol, I ALSO HAVE CERVICAL DYSTONIA attacks during some TN attacks! This is really amazing meeting you. Also Lisa, I have had MRI's for my trigeminal neuralgia of the brainstem and cranial nerves that show nothing. My last MRI of my neck and cervical spine recently is what brings me to the point of surgery, although I am concerned about the nerves in the area getting WORSE if the problem is from inflammation. Not to mention one fusion begets another unfortunately. It's a big decision.
 
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jujubeee714 replied to jujubeee714's response:
I was told the trigeminal neuragia was likely NOT from the cervical spine issues. I'm just wondering what's going on since it seems weird to me that my spine compression would be causing my trigeminal neuralgia (and I have it BAD-all 3 branches sometimes) and geniculate (on right only) and occipital and tarsal- how could the cervical spine cause tarsal nerve problems?. IF THE SPINE problems can cause all that then I'm all in for the surgery...see what I mean?

Idk what to do. I just got over a bout of sacroiliitis and it was awful. They did xrays and only found a slipped vertabrae (that was NOT the pain I had during the attack) I couldn't lay straight or stand long or be touched, my hip and pelvis screamed in pain. Couldn't get up or sit without help. JUST AWFUL. My grandmother had lupus (undx'd and dx'd as RA) and ankylosing splondylitis. Her spinal bones were fused terribly and she suffered from sacroillitis so I knew exactly what it was when I had it. She also had extensive nerve problems and again Idk if it was from the lupus damage or her spine fusion issues.

Q: Is this an issue with the nerves too?

I apologize for all my confusions. I have many specialists and have to coordinate my care myself quite often. I'm not medically trained in the least..just looking to live a life with quality. Thanks
 
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lupylisa44 replied to jujubeee714's response:
I am having the trigeminal nerve issues too!!! When the neck/shoulder pain started so did the facial nerve pain. The doctor said that it's not realated to the pain in my neck/shouldeer because it is a different nerve meridian. Since this is all new to me, we are in the same boat! I get my MRI next week and hopefully it will show something to provide some answers.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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jujubeee714 replied to lupylisa44's response:
Lisa, just stopped by to wish you GOOD LUCK tomorrow during the MRI. Remember, GO to your HAPPY PLACE... Much love, Julie
 
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nancyj95 replied to jujubeee714's response:
I sort of know what you're going through. I don't have spinal compression, I have vertebral fractures from being on steroids for so long (at least they think that's the reason since bone density a year ago was borderline ostoepenia) and now I have had 2 fractures since the beginning of November. I am currently trying to take my mind off the fact that I'm having a second surgery this afternoon for this. Last one was only 5 weeks ago. I'll be seeing a 2nd endocrinologist on Friday to try to get some answers. I wish both of you luck with your problems and tests!
 
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jujubeee714 replied to R Swamy Venuturupalli, MD, FACR's response:
Turns out I had another EMG and I now have tarsal in both feet, radial in my left, ulnar in both, carpal in both, pereanol in the right. WHATS GOING ON? This isn't from my neck. My neuro thinks its from lupus.
It happened all at once, all the compressions. Its getting worse and more painful everyday. I have orthotics now and am in PT and being referred for surgery for the compressions.
I am barely able to walk, the tightness and pain is really debilitating. I can't type for long anymore without my hand screaming in pain.
Is this vascular? Is this possibly the beginning of ankylosing spondylitis? My grandmother had it. Is this structural or vascular or both?
I don't see my rheumie till next week. My neuro also found slowing in the left brainwaves. Confirmed its seizures I've been having (bitten tongue, sores, chipped teeth) and it was likely I did have a TIA in early July.
What are appropriate tests?
Thanks, Julie


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