Skip to content
My WebMD Sign In, Sign Up
Last Reply:
Do I have CNS lupus?
avatar
Anon_11996 posted:
I have systemic lupus and cranial nerve disorders. I have trigeminal neuralgia, taste and smell problems, Bells Palsy twice. I know of the 19 symptom criteria from the ACR, and I have a few of them. My MRI's are clear.

Should I be treated more aggressively than 20mg of prednisone. During TN attacks I was told this would not help. I've had PN problems for over 20 yrs now and it is worsening, esp these last couple years.

Thanks, Julie
3 Replies |Watch This Discussion | Report This| Share this:Do I have CNS lupus?I have systemic lupus and cranial nerve disorders. I have trigeminal neuralgia, taste and smell problems, Bells Palsy twice. I know of the 19 symptom criteria from the ACR, and I have a few of them. My MRI's are clear.<br /><br />Should I be treated more aggressively than 20mg of prednisone. During TN attacks I was told this would not help. I've had PN problems for over 20 yrs now and it is worsening, esp these last couple years.<br /><br />Thanks, Julie
Reply
 
avatar
lupoid responded:
Lupus attacks my cranial nerves, too, and I get shooting pains up the side of my face as well as numb spots. I've found acupuncture is very effective at eradicating the pain. Lyrica helps some people, as it directly targets neuralgia, but I couldn't tolerate the side effects -- too much mental grogginess and loss of balance.
Report This| Share this:Do I have CNS lupus?Lupus attacks my cranial nerves, too, and I get shooting pains up the side of my face as well as numb spots. I've found acupuncture is very effective at eradicating the pain. Lyrica helps some people, as it directly targets neuralgia, but I couldn't tolerate the side effects -- too much mental grogginess and loss of balance.
Reply
 
avatar
TLK2468 replied to lupoid's response:
I also have numbness, I am new to lupus year, not much on skin lupus. I feel like I got the diagnosis and have a nice day???
Do you understand the numbness? Forehead and around my nose?
Report This| Share this:Do I have CNS lupus?I also have numbness, I am new to lupus year, not much on skin lupus. I feel like I got the diagnosis and have a nice day??? <br />Do you understand the numbness? Forehead and around my nose?
Reply
 
avatar
anowlin responded:
Years ago, when I was first diagnosed, I was told I had CNS lupus; then we moved and I proceeded to tell my NEW rheumy that I had CNS lupus. "Impossible!" you'd be on meds for the rest of your life for CNS lupus.

Then, I spoke with my new neurologist, "You'd be much sicker than you appear if you had CNS lupus. So, I guess have my answer that the first doc had misdiagnosed my symptoms.
Report This| Share this:Do I have CNS lupus?Years ago, when I was first diagnosed, I was told I had CNS lupus; then we moved and I proceeded to tell my NEW rheumy that I had CNS lupus. "Impossible!" you'd be on meds for the rest of your life for CNS lupus.<br /><br />Then, I spoke with my new neurologist, "You'd be much sicker than you appear if you had CNS lupus. So, I guess have my answer that the first doc had misdiagnosed my symptoms.
Reply


Back to Top
Back to Top

See Related Pain Management Communities

See All Communities

Featuring Experts

Profile
R Swamy Venuturupalli, MD, FACR Expert
Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

Coping
With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.
Visit Lupus Day2Night

Popular Discussions

Start a Discussion | See All

Helpful Tips

Minimizing steroid side effectsExpert
It is likely that most lupus patients will at some time be taking steroids to control some aspect of their disease. In order to minimize ... More
Was this Helpful?
Yes No
73 of 103 found this helpful
Post a Tip | See All

Helpful Resources

Post a Resource | See All

Related News

Related Drug Reviews

  • Drug Name User Reviews
See More

Report Problems to the
Food and Drug Administration

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.