anyone here with cranial neuropathies from lupus?

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Regular Member

Date Joined Jun 2012
Total Posts : 26
   Posted 6/18/2012 9:59 PM (GMT -6)   
Hi all. I have cranial neuropathies, it is said to be from lupus destroying the myelin sheath on my cranial nerves. It caused trigeminal neuralgia, geniculate neuralgia, burning mouth syndrome, distortions in taste and smell and bells palsy.

I've met a few others with SLE with it. Just looking for comrades...LOVE Julie

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Date Joined May 2005
Total Posts : 7725
   Posted 6/18/2012 10:33 PM (GMT -6)   
One of the separating factors between MS and Lupus is that MS destroys the myelin sheath...

Hope you find some comrades soon!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jun 2012
Total Posts : 26
   Posted 6/18/2012 10:43 PM (GMT -6)   
Right. I've been tested for MS and my MRI's are clear of lesions. I had a fiesta MRI and have some blood vessel inflammation ,but according to my neurologist, lupus is the culprit here. It may happen more like it does in PN, and I've had peripheral neuropathy for almost 15 yrs now and retinopathy from lupus (not diabetes) I have the aic's to prove it., lol.

So I don't know. It's a tough call - I certainly get that and my docs just treat the symptoms. That's my main complaint, I want more aggressive SLE treatment to help prevent cns issues, seems to me that would be wise, but my docs do not agree. That is one the main reasons I want so desperately to hear from others like me. i've actually met quite a few, you'd be surprised!

Thanks for the reply Lynnwood! Hugs, Julie

Regular Member

Date Joined Aug 2011
Total Posts : 74
   Posted 6/19/2012 5:41 PM (GMT -6)   
Hello Julie. I am a bit amazed because I just came from my doctor's office and he thinks that I have trigeminal neuralgia. I also have lost the ability to smell and taste of food has not been the same lately...kind of blah or tastes like metal sometimes. My ENT said that there is nothing wrong with the sinus area so he has no clue. I also was recently diagnosed with vertigo and have tinnitus.

My question did they diagnose you? Were there a lot of tests?

I never want to tell my doctor anything because I feel like he will think that I am a hypochondriac and I don't want to be one of "those" patients. It just seems like there is always something new. I call it the flavor of the week. :-)

Anyway, I hope that someone else can help you more than I can. Best of luck!


Regular Member

Date Joined Jun 2012
Total Posts : 26
   Posted 6/19/2012 6:04 PM (GMT -6)   
Hi LupusMomma,

I was dx'd by my neurologist whom I've been seeing for many years for peripheral neuropathy. He did a nerve study on the left side of my face to check the amount of time it takes the nerve and muscle signals. Same way as dx'ing PN, but you can get a dx from your clinical symptoms as well. They were able to get a response on my face because I have a twitch left over for weeks after an attack.

Hey they should have stopped calling you a hypochondric after being dx'd with LUPUS! And yes, those are symptoms of cranial nerve problems. Here's a link to my blog where I list all the symptoms of cranial neuropathies:

And don't give up. It's a complicated thing, and getting treatment is pulling teeth but your doc SHOULD refer you to a neurologist. Unfortunately the ENT you saw didn't find anything, but that doesn't mean he checked EVERYTHING. From what I understand, a fiesta MRI is the only MRI that is sensitive enough to show blood vessels, so THAT is what you want. Not all insurances cover it and not all neurologists do it. You may be able to see a neurologist who will refer you to a neurosurgeon who will do it if he won't.

But it is not "nothing". LupusMomma, I'm not giving up either. I think our lupus needs more aggressive treatment so these cranial nerve problems don't end up causing MORE problems., like CNS lupus. It IS a symptom of neuropsychiatric systemic lupus and we might benefit from seeing a neuropsychiatrist. They may have even more tests to determine whats going on.

Here's a link to the 19 symptoms used to dx NPSLE where cranial neuropathies is one of:

Keep in touch, LOVE Julie
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