CNS LUPUS........

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KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/4/2008 2:19 PM (GMT -7)   
Hey all! I would really appreciate it if you guys would share with me how Lupus has affected your CNS.....
What type of symptoms do you experience?
 
Later,
:-)  

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/5/2008 8:21 PM (GMT -7)   
Some people experience seizures, migraines, paralysis, numbness in the hands and feet.  Strokes.  CNS lupus is pretty scary if it's aggressive.  The only true way of knowing if you have CNS lupus is to have a spinal tap done.  Otherwise, these same symptoms can occur in people who don't have it in their central nervous system.  It's not always easy to spot if you have CNS lupus or not.  The symptoms are the same in plain old lupus too.  
 
Hope this helps,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/6/2008 9:12 AM (GMT -7)   
Thanks ginny. This is very confusing to me. So you can have nervous system symptoms but not have CNS Lupus? Like for example, buzzing in feet, numbness, brain fog, panic attacks etc, and not have CNS lupus?

Thanks!

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/6/2008 9:21 AM (GMT -7)   
KaAl, I think a lot of us have the brain fog, anxiety and some weird sensations in our exremities without have clinical CNS. All of the things you mentioned are pretty common for us lupies. Like ginny said, CNS lupus is scary and can be very serious. If you are worried about CNS issues, please talk to your rheumy so you can get checked out. You are right that a lot of this is confusing - there's nothing simple about lupus.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/6/2008 9:23 AM (GMT -7)   
KaAl said...
TSo you can have nervous system symptoms but not have CNS Lupus? Like for example, buzzing in feet, numbness, brain fog, panic attacks etc, and not have CNS lupus?


Yes, that is totally correct. yeah

To actually be dx w/CNS lupus your MRI must show it.

I have have had all your symptoms (buzzing in feet, numbness, brain fog, panic attacks), but my MRI's have always been clean, so it is not considered CNS lupus.

CNS lupus is when these symptoms become severe, and show up in an MRI.

Cheers, yeah

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/6/2008 1:00 PM (GMT -7)   
Oh, O.K. Well, I did have a mri of my brain last January and nothing bad showed up. Thank God. The "brain fog" that I have is not only do I forget stuff, I also have a drunk like feeling. I just feel "off" everyday! Back in January I had it real bad. Major fatigue (could not even lift a fork to eat) and the "brain fog" was awful. I could be watching t.v. and did not understand what I was watching. My mind felt very slow to process.

Does anybody know what I'm talking about? If so, do you feel like this everyday?

Thanks,
KaAl

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/6/2008 1:28 PM (GMT -7)   
When my mind quit working like that (not only could I not find words, I'd loose track of what the subject we were talking about was -- got so I quit driving as I was sure to get disoriented and/or forget where I was going) was when they did my MRI.

My rheumy tried Cellcept and for me, it was truly a miracle drug - it's given me back my mind and lessened the fatgiue a good bit. I feel human (a tired human, but human!) again! Now ramping down & off the Cellcept (been on it since Oct 06).

Are you taking any meds? Some can help the fatigue, some can actually contribute to the tiredness....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/6/2008 1:56 PM (GMT -7)   

Hi Everyone.  I've always had CNS problems, but my MRI is clear and my EMG just shows "slowing."  I'm having difficulty typing this because my hands jerk. I use a cane, but still fall.  My jaw will jerk when I talk.  Recently driving has become scary.  If I drive more than 20 minutes, I get double vision and can't focus making depth perception a bit*#.  I see my rheumy January 15 and I'm finally going to ask to try Cellcept. I also continue to see my neurologist because I can always use more tests, right?  As usual, Lupus Sucks, but I keep trying and I'm thankful that we all do.  Love, Butterflake

 


Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/6/2008 2:00 PM (GMT -7)   
(((((((((Butterflake)))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/6/2008 2:13 PM (GMT -7)   
Thanks Rosie.  You're such a sweetheart!

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/6/2008 2:59 PM (GMT -7)   
An MRI is useful for some people in diagnosing CNS lupus, but the only test that will give you the absolute truth about the disease is a spinal tap.  CNS lupus can exist in the spinal cord, and not necessarily in the brain.  So to have both an MRI and a spinal tap is important if CNS lupus is suspected. 
 
But most of our brain fog, forgetfullness, shaking, etc,etc, is just plain old lupus.  I can't remember the stats for how many people have CNS lupus compared to the general lupus population, but it's low.  So, don't worry about this unless you have to!!! LOL. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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