Weird twitching sensation inside my head?...CNS lupus?...anyone else?

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MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/28/2010 6:13 PM (GMT -6)   
Hi all. I have been diagnosed with UCTD w/SLE features thus far as well as Epilepsy. Ive had 3 seizures in my whole life but since the first one have had nystagmus(eye twitching)at random times..sometimes more, sometimes less everyday. It also gets worse when I get tired... However, I have a similar feeling that I get inside my head. It feels like its literally in the middle of my brain...it feels like the same few second twitch that happens with my eyes. I get this less than the nystagmus but it throws me off balance for a second and I have to sit/stand there and gather myself sometimes before I move. I have not been diagnosed with any CNS involvement but was put on neurontin for neuropathy type burning pain in my legs,arms & back of shoulders/neck(didnt work)and have orthostatic hypotension, the epilepsy(which started at 15 yrs old before my disease started appearing slowly),tingling in my feet/legs hands/arms and face, brain fog, raynauds syndrome,dizziness,shakiness,weakness,constant tonal tinnitus & intermittent pulsatile tinnitus,a cramping in my arm that causes my fingers to bend towards my palm etc.

I guess my question(s) is does anyone have this weird twitching in their head sort of thing?
And how can I get my rheumy to agree I need to be evaluated for CNS lupus?

Ive been on Plaquenil for about 2 yrs now and its not worked for my disease at all. Pain pills have not worked either. I need something new! Thanks. -Lupie Britt

PainterGal
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/30/2010 11:24 AM (GMT -6)   
I almost cried when I read this. It sounds almost like me. I have what feels like a rubber band snapping in my head on the left side. And my hands and feet go numb and tingly and hurt. My face twitches by my right eye. I drag my right foot sometimes. My legs burn inside like a blow torch but only from the knees to ankle area. So many other symptoms come and go too. But the worst is I have had inability to speak several times and then I could feel the blood rush and heard it too.I had neurontin given to me but could not take it, it swelled me up and made me have awful side effects like I was going to be suicidal.  Now I have a hard time thinking and speaking, I can't talk right to express my thoughts good. I have lost all friends and family but my husband is the only one who has stood by me. All others think I'm making it up or am crazy. No one belives its Lupus but one doctor did say so. I have rashes and hard time swallowing and so many things. I still am being tested by more doctors who don't want to accept this is what is wrong. But now I know I am not alone and I am not nuts. Thanks. I was loosing hope but now I feel hopeful again.  

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/30/2010 9:33 PM (GMT -6)   
I'm so glad I could be of some help to you, I too know what it's like to not be heard. I wish you all the best & you can message me anytime! I have pretty much the same things you do. *hugs* -Lupie Britt

jillyanne
New Member


Date Joined Dec 2010
Total Posts : 1
   Posted 12/2/2010 5:58 PM (GMT -6)   
Thank you for this, It's took me 20 years to get a diagnosis and I'm feeling so low right now. For years Doctors have told me I'm making it up, I must be mistaken, there isn't an illness with my symptoms etc.. I've never heard of someone who is so similar to me before. Thank you for sharing, you have no idea how grateful I am!

kdogg25
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/26/2011 6:38 PM (GMT -6)   
Just left my rhuemy. I am diagnosed with lupus. Positive high ana test, with positive ssa and ssb. Everything else negative( dsDNA, SM,). Which is good I guess so the doc tells me. I been having nerve issues I believe is thus common with lupus. I am in dis believe and its like a dark cloud is hanging over me. I just want to crying some more but my family is giving me a hard time. I know they're right, and I am grateful that it us a mild form of lupus and not lifethreating or worst cancer. But it is still hard coming to grip with the fact I have a chronic illness. I have always had health anxieties probably because I always knew something wasn't right. I am having a hard time accepting this illness any suggestions on how to cope. I think I have twitching all over my body in side and out. Most twiches are visible but some only felt by me. My eye in left eye seem to be dimming on the sides. I have balance problems at times and see flashing white dots sometimes. MRI of head and spine where normal as of 1-3-11. I get short of breath sometime, heart skips beat but cardio doc said everything looks good.

roseofsharon
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/2/2011 2:39 AM (GMT -6)   
i know i have cns. i have had what they call simple seizures where i feel a warm feeling in my brain go from the left side to the right cpuldnt talk while it was happening. i was dizzy for almost 2 years after this happened. still dont know if that was from the seizure or anxiety. am better now. still get little pains in my brain. am on nuerontin. hope you all are doing better today, i know how hard it is , just keep thinking it wll get better !

oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 2/2/2011 6:50 PM (GMT -6)   
If possible I would request 2 blood tests.
1. TPO-ab
2. GAD-65

There is a disease that is very similar to lupus (some rheumys say the are the same thing) that a high TPO-ab is a sign (thyroid perioxadase antibody)

The GAD-65 explains so many symptoms and is being seen in many autoimmune diseases. This is a bit more expensive and often has to be sent in to a specialty clinic.

Both are well worth it

Good luck
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