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View Full Version : Twitching feeling in my head?...anyone else with cns lupus?



Mommyof1
11-28-2010, 03:52 PM
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

tgal
11-28-2010, 06:29 PM
Hey there,

I get that tingling in my head quite often as well as on my right side in the eye and around my mouth. Like you I have the same in my feet legs etc. I have seizures now and at first I would actually smell burning rubber before my seizures but now, with the meds, I don't have that anymore. What I have is a very strong tingling feeling in my scalp. My head and face get very sensitive to the touch, it begin to tingle really badly and my brain fog get REALLY bad.

I wish I could tell you how to get your rheumy to get on board but i still can't get mine to give me a diagnosis yet! Good luck to you!

rob
11-28-2010, 07:28 PM
Hi Britt,

I have some of these symptoms. I have both SLE and MS, and have this last year been dealing with neurological pain caused by Trigeminal Neuralgia. I also experience periodic nystagmus, and it happens mostly when I am tired, or, oddly enough, when I really try to concentrate on focusing on what I am reading. The more I try to stop it from happening, the more it happens, and the worse it gets.

I don't know if I get the same exact "twitching in your head" sensation that you do, but I do get something that I would say is very similar. It's hard to explain. It's like a sudden shift of awareness, like a shaking sensation between my ears, but I know that it isn't caused by some external stimulus, like a bump in the road, or walking down a set of stairs.

It's all really hard to explain, but it sounds much like what you are experiencing. Are you seeing a Neurologist, as well as the Rheumotologist?

Rob

magistramarla
11-28-2010, 10:29 PM
The docs have refused to admit that I have CNS problems, but I think that I do. The first neurologist that I saw in Texas noted that I have nystagmus. The one here in Cal. didn't see it, but my chiropractor noticed it immediately, so go figure! I've had balance issues for a long time, complicated by Meniere's Syndrome.
Especially when I'm tired, random muscles will twitch and spasm. I also have numbness and tingling in my feet and legs, and sometimes my hands. I have Spasmodic Dysphonia, which is uncontrollable spasms in the vocal cords.
I've asked all of the docs whether this could all be related to the AI issue. One said yes (excellent rheumy back in Texas). The rest of my docs have all denied that it could all be related, and told me not to worry so much.
Hugs,
Marla

Mommyof1
11-29-2010, 10:56 AM
Hey Rob,

I totally get what you're saying, that's exactly it...the nystagmus/triggers etc as well as the twitching in my head. I have wondered if im not experiencing nystagmus at the same time as the twitching inside my head and if they have something to do with one another??
I dont have the Trigeminal Neuralgia but do the neuropathic pain which they think is Peripheral Neuropathy but was negative on a skin biopsy and on 2 different EMG tests. It started out in just my thighs and spread from there to my lower legs/calves & then my arms and again to the backs of my shoulders/neck area. The tingling spread as well from my feet up my legs, my hands up my arms and into my shoulders partially and some in my face. None of this happens every time I have tingling but its definitely evolved over time. I also of course have arthritis in many joints with puffiness, sharp pains in the bones etc. & just recently my toes are so cold that I get random waves of this deep painful ache that starts at the base of the toes on both feet and goes down to the tip of them. It happens in both feet at once its never just one.
My rheumy is going to have me get an MRI/MRA w/dye done and talk to my neuro about the possibility of another EEG to see if it makes any difference. I do see 2 neurologists actually. One at the hospital where my rheumy diagnosed me with AI disease and a local one ive seen since I was 15 for my epilepsy. The hospital is 3 hrs away so I have drs in both places in case I have an emergency. They are all up to date on all the info/tests etc that I get done so I can work with all of them.
What Im wondering is how did they distinguish the difference between Lupus related CNS & MS symptoms? How were you diagnosed with both? And what is your treatment for things at present?
Thanks to all for the posts...hopefully something will give some answers soon. -Lupie Britt

little.red
11-30-2010, 09:23 PM
I was recently diagnosed with CNS Vasculitis from Lupus and get the twitching feelings in my head. I was finally diagnosed after an angiogram, though. In my case the MRIs didn't show enough. I also get odd headaches that are like small pain spots in certain parts of my head.

I see you'll be getting the MRI done, though, so I hope they are able to get some answers from that for you.

Mommyof1
12-01-2010, 03:24 PM
Will the MRI show as much as the angio? I had an MRI done probably 2 years ago now and it only showed some slight mastoiditis but nothing was ever really said about that and nothing was done about it...?

tgal
12-01-2010, 04:17 PM
The cold toes! I know this is about the tingling (which I definitely could talk about today!) however I saw something said about the toes getting so cold there was pain. Let me first say that since I was spayed (LOL sounds so much more fun then "had a hysterectomy) I am really hot natured. I don't usually get cold however over the last week my fingers and toes have been getting really cold. My toes, however have become so cold that they hurt. They almost felt like they were on fire from cold. Anyone know what causes that? (I know this is a different topic but since Mommyof1 brought it up seemed like a good place to ask)

Mommyof1
12-01-2010, 06:22 PM
You must be experiencing the burning as well as the ice cold feet at the same time. Def know that feeling! It makes the waves of pain feel like they go as deep into the bone as possible & touch the nerve endings..uggh! Peripheral Neuropathy IS damage to the nerves though so it makes sense :/

tgal
12-01-2010, 06:36 PM
You must be experiencing the burning as well as the ice cold feet at the same time. Def know that feeling! It makes the waves of pain feel like they go as deep into the bone as possible & touch the nerve endings..uggh! Peripheral Neuropathy IS damage to the nerves though so it makes sense :/

Exactly!!!! Oh this is lovely! Let's add another part of my body damaged! LOL well at least I have CNS so maybe pretty soon I won't remember that it hurts (sorry I know it isn't funny but sometimes all you can do is laugh)

red246
12-01-2010, 08:49 PM
Exactly!!!! Oh this is lovely! Let's add another part of my body damaged! LOL well at least I have CNS so maybe pretty soon I won't remember that it hurts (sorry I know it isn't funny but sometimes all you can do is laugh)

Now you sound like me! If we don't laugh about it at least sometimes, we'd be crying all the time and what good would that do us? Thanks for making me smile tonight!

tgal
12-01-2010, 09:12 PM
OMG ignore me! I am running on a total of 9 hours sleep in the last 3 days and major brain fog. I really do know that CNS is central nervous system (IE nerves) but when I wrote that post my brain was thinking brain. I logged off and was laying down watching TV when it hit me! I guess it goes right along with calling the clothes hamper a car. I just never know what I am going to get confused about!

Mommyof1
12-02-2010, 01:45 PM
I totally get what you mean! I have to laugh sometimes or it does get too depressing. The anxiety/mood swings etc get way worse right before my periods too so it doesn't help. I just try to keep myself calm. Plus today I haven't been able to eat since I have to be on an all liquid diet and drink the gallon of crap to clean out my system before the scope tests tomorrow. UGGH. I have a headache and am so out of it. Ill be glad when this is over and hopefully we'll have some answers!! *hugs* all. -Lupie Britt

magistramarla
12-02-2010, 10:43 PM
The cold toes! I know this is about the tingling (which I definitely could talk about today!) however I saw something said about the toes getting so cold there was pain. Let me first say that since I was spayed (LOL sounds so much more fun then "had a hysterectomy) I am really hot natured. I don't usually get cold however over the last week my fingers and toes have been getting really cold. My toes, however have become so cold that they hurt. They almost felt like they were on fire from cold. Anyone know what causes that? (I know this is a different topic but since Mommyof1 brought it up seemed like a good place to ask)

Mari,
What you are describing sounds lots like Raynaud's Syndrome. Google it and see if you agree. My toes will get cold and numb. When I was in Arkansas for the birth of my grandson, it was cold outside and I was stressed, so my toes swelled up and turned purple. I could barely walk.
We've had a few chilly nights here lately, and I've had two toes swell up for a while. The sheets even make them hurt at night when they touch them.
Hugs,
Marla

rob
12-03-2010, 06:32 PM
Hi Britt,

I'm sorry I didn't respond sooner. Ironically, CNS problems have me over a barrel, so to speak. I can't mentally keep things together right now, but I will answer your questions when I can.

Rob

tgal
12-04-2010, 12:45 AM
Mari,
What you are describing sounds lots like Raynaud's Syndrome. Google it and see if you agree. My toes will get cold and numb. When I was in Arkansas for the birth of my grandson, it was cold outside and I was stressed, so my toes swelled up and turned purple. I could barely walk.
We've had a few chilly nights here lately, and I've had two toes swell up for a while. The sheets even make them hurt at night when they touch them.
Hugs,
Marla

Hey Marla,

I know what it is but I thought your fingers/toes had to turn colors when with Raynauds. Mine don't do that. I mean, they get a tad bit more red like any body part does when it is cold but not like the usual Raynauds pictures. They do, however, hurt to the touch. I found bath/shower water feels like I am sticking them in fire and socks feel like they are rubbing my toes raw

tgal
12-04-2010, 12:46 AM
Hi Britt,

I'm sorry I didn't respond sooner. Ironically, CNS problems have me over a barrel, so to speak. I can't mentally keep things together right now, but I will answer your questions when I can.

Rob

Hope you are feeling better soon. Miss you and my thoughts are with you still

magistramarla
12-04-2010, 09:41 PM
Mari,
My toes swell and turn red, then purple. I'll sometimes get what looks like a blood blister on the tips, and the skin on that blister will later peel. The shower hurts my toes, too.
When I described it to the rheumy, she didn't even look at them - she just said Raynaud's and told me to wear warm socks.
Hugs,
Marla

magistramarla
12-04-2010, 09:43 PM
I hope that we hear from you soon, Rob.
I'm thinking about you and hoping that you feel better soon.
Gentle Hugs,
Marla

Mommyof1
12-07-2010, 06:10 AM
Thank you all and I hope you feel better real soon Rob! *gentle hugs* -Lupie Britt

tgal
12-11-2010, 09:20 AM
Mari,
What you are describing sounds lots like Raynaud's Syndrome. Google it and see if you agree. My toes will get cold and numb. When I was in Arkansas for the birth of my grandson, it was cold outside and I was stressed, so my toes swelled up and turned purple. I could barely walk.
We've had a few chilly nights here lately, and I've had two toes swell up for a while. The sheets even make them hurt at night when they touch them.
Hugs,
Marla

Hey Marla,

There is a picture on Mommyof1's profile of her toes that shows exactly what my toes do. The only difference is that it isn't all of my toes but 3 of them. My fingers do the same thing (usually all 4 just not the thumb) but the difference is that on my hand the fingers get bright red but the knuckles turn stark white.

I love the fact that the forum shows random pictures at the bottom of the main page. It always makes me go look at people's pictures!

copierfixerguy
12-12-2010, 09:07 PM
My daughter had all of the symptoms you mentioned. She has "lyme". Have you had the Western Blot test done? That checks for Lyme and Lyme co-infections. All sorts of nasty bacteria's. We have learned that Lyme presents itself in many ways.

copierfixerguy
12-12-2010, 09:18 PM
I forgot to mention. Most doctors don't want anything to do with Lyme, so find a Lyme literate doctor in your area.

tgal
12-12-2010, 09:29 PM
My daughter had all of the symptoms you mentioned. She has "lyme". Have you had the Western Blot test done? That checks for Lyme and Lyme co-infections. All sorts of nasty bacteria's. We have learned that Lyme presents itself in many ways.

Hi Copierfixerguy. That is a great question! I know my doctor tested me for that during the first round of testing however I also know many doctors ignore it. It is one that needs to be paid attention to!

One more thing; Welcome to WHL!

Mommyof1
12-14-2010, 09:33 AM
Good to know my pics can be helpful to some of you :) And I was also tested for lyme as well and it was negative more than once...so im guessing I AM just lupie lol