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View Full Version : Anyone with cns lupus or neuro problems due to lupus???



laurid8967
01-19-2010, 08:55 AM
Hi all - hoping this post finds everyone flare free and feeing Fabulous. My question is stated above as I am in a HORRIBLE flare with some serious neurological problems such as seizure-like events, heavy duty leg issues (numbness,involuntary muscle spasms, pain, feeling of coldness), severe weakness(too weak to do much of anything), intense pressure-like headaches and eye pain, and More than usual brain fogginess/memory issues. I saw a new neuro last week and he has - thankfully - ordered a TON of tests.
But, I was wondering if anyone here has had some similar experiences. My office neuro exam showed right side weakness and a positive Babinski reflex?I am also loaded with livedo reticularis(WAY more than usual) and he said that by his exam he can tell that there is DEF something going on, but he is not sure WHAT yet. Had EEG done which was asbnormal as well, but showed no definite seizure (having another one done).
In the past, I have learned more about my disease from my fellow Lupies here, than in most any doctors office, and was just hoping someone could shed any light on the situation. Im SO bummed because I was doing relatively well for a bit, and then BAM! Back on my butt. Pain is relentless - not much working there.
Love to hear from anyone - will check in in a bit as going to get CT scan done (I personally think CT scans are a waste of time, unless one has a mass, etc. Not a great diagnostic tool, but, what the heck, right?)
Thanks in advance my friends...
Love and blessings
Lauri

magistramarla
01-19-2010, 10:31 AM
Hi Lauri,
I have many of the leg issues that you mentioned - numbness, involuntary muscle spasms, pain, LOTS of feeling of coldness and my legs just "give out" with no warning. I went through lots of neuro tests back in Texas, but nothing seemed to jump out at the docs. Sadly, they just seem to dismiss most of these symptoms when I mention them. The neuro that I saw in Texas seemed fascinated that I just didn't feel the tests that he did below my knees at all. Like you, I seem to definitely have something wrong neurologically, but no doc has yet figured out what.
Please let me know if you have any luck with this.
Hugs,
Marla

rob
01-19-2010, 11:18 AM
Hi Lauri,

The presence of the Babinski Reflex in an adult is a fairly accurate indicator of cns problems. I you want to learn more about the part of the nervous system it is related to, you can google the term "pyramidal tract". The presence of the reflex on the right, left or on both sides is also a good way for the neuro to isolate the particular nerve bundles and pathways that are affected. I have the Babinski Reflex on my right side. It's amazing what a neuro can learn from seeing how your big toe reacts to foot stimuli.

As you probably know, my cns problems are a direct result of de-myelinization from MS. However, my Neuro and Rheumo both agree that it can be difficult to differentiate between cns problems from MS, and cns problems from CNS Lupus. The symptoms you mention can all be caused by CNS Lupus. One test that you will most likely have is a brain MRI. Both CNS Lupus and MS will show abnormalities on an MRI for most people. I take a rather effective drug called Neurontin, which can be prescribed for nerve related pain. For me there are few side effects, and the drug does help with much of my CNS related pain and odd sensations (I'm always feeling like I stepped in a cold puddle of water). You could ask your neuro and rheumo about Neurontin.

Just so you know, I have had serious cns problems, including loss of control and all sensation in my right leg with a hard fall as a result, and terrible neuropathic pain, and it has all been controlled quite well by Methylpred IV infusions and Neurontin. There are many treatment options for cns symptoms and pain, and they can be really effective, so have hope! There are ways to control this. It sounds like you are already on the righ track with the battery of tests the neuro has lined up for you. Most of the tests you will probably have are for the most part easy, and relatively painless. Some can be a bit uncomfortable and boring as hell, but for the most part, it's easy stuff. I know the waiting and worrying sucks, but you can handle this.

Rob

laurid8967
01-19-2010, 12:33 PM
Thanks to both of you for your responses. The Babinski thing was on the right as well. Just had the CT scan and go for MRI Friday. I have gotten alot better at waiting - Thank You God - having gotten used to it over the past few years. Rob, you are always a wealth of info - thank you. Im feeling ok about everything and am SO grateful that I have a doc that is interested and thorough. It makes all the difference in the world. Ty both again :)

mountaindreamer
01-19-2010, 04:32 PM
As usual, Rob came through again....what great information he shared with you. I just wanted you to know that i am sorry for this horrible flare and all of your present issues. I hope you have a peaceful rest tonight and that tomorrow is better.

laurid8967
01-19-2010, 06:47 PM
THank you Phyllis for the warm thoughts.. Rob is staight up!

Nonna
01-23-2010, 01:53 AM
i have some neurological problems too. rob's post is great. It helped me too. Are you both right handed? I'm left handed and all my weakness is on that side. My neuro has been treating me with mirapex for the last year and it has cut the tremors (shakes) in half. I take tizanidine at night to allow me to relax enough to go to sleep. I used to ask why do I have all these different medical conditions. then in December my rheumy said You have Lupus. the Lord answered me.....

Nonna

Lauri I also have the Serenity Prayer tacked up right in front of my at my desk at work. It does help to read it. Also Mother Teresa's quote of Matthews gospel: I know the Lord doesn't give me more that I can handle, I just wish he didn't trust me so much. Here's a cyber Hug!



Obviously I'm not sleeping tonite though

scubagramplit
01-23-2010, 09:19 AM
I would like to add that when I had my MRI brain scan they did detect some minor inflamation, I never got much more information than that. I have had some serious memory and consentration issues, headaches. It is kinda interesting that I read about this twitching thing, not bad but I just thought it was me, haha. Once in a while I feel some numbness in my toes but other than that I always seem to run on the warm side, I sweat like a pig in moderately warm temperatures with minimul activity. I pray that all gets gooder. God bless, Jim.

laurid8967
01-23-2010, 09:21 AM
Hey Nonna -
Thanks for response and sorry you have to deal with these issues too! Too funny though - my neuro said the same - With Lupus anything goes. And about Mother Thersa's quote? A friend gave it to me lsat year in a plaque form and its hanging in my living room!!
Stay steady
Lauri

rob
01-23-2010, 10:09 AM
I would like to add that when I had my MRI brain scan they did detect some minor inflamation, I never got much more information than that. I have had some serious memory and consentration issues, headaches. It is kinda interesting that I read about this twitching thing, not bad but I just thought it was me, haha. Once in a while I feel some numbness in my toes but other than that I always seem to run on the warm side, I sweat like a pig in moderately warm temperatures with minimul activity. I pray that all gets gooder. God bless, Jim.

I'm the same way Jim. I run warm all the time, and any exercise, even in cold weather causes neverending sweats and overheating. For me, it's an effect of MS. I can sit in front of an A/C unit blasting cold air and I still don't cool down. Takes an hour or two usually to cool off. I'm just glad I live in Maine now, and not Arizona.

Rob

scubagramplit
01-23-2010, 10:24 AM
I'm the same way Jim. I run warm all the time, and any exercise, even in cold weather causes neverending sweats and overheating. For me, it's an effect of MS. I can sit in front of an A/C unit blasting cold air and I still don't cool down. Takes an hour or two usually to cool off. I'm just glad I live in Maine now, and not Arizona.

Rob
Boy, that is going from one extreme to another(: I kind of went the other direction, from southern Oregon East of the Cascades down into Northern California, Chico area. What a change going from freezing winters and humidity in the 30s and under, way under in the summer generally, to this summer heat and lots more humidity. Never a dull moment in this life that God has blessed us with. God bless, Jim

ricketyrose
01-23-2010, 05:19 PM
look up the porphyria foundation member stories and see if any of that sounds familiar
ahhh porphyria the great how and why. ya cant get more simple than a mutated gene. it has to be really old if it effects all races but not equally. yes if ya cant tell ive got the psychosis. weeee what a ride. porphyria is the mama and environmental stresses are daddy and its offspring are the infinite manifestations lupus being one. some say ms is another. who knows if thats true but imagine what that implies, in our vast population we are still experiencing inbreeding depression.

laurid8967
01-23-2010, 05:28 PM
Jim, Im sorry - I didnt thank you for your reply earlier. Its also nice to meet you. I actually sweat alot too - at the weirdest times - with no cause. AND - I sweat NOT in my underarms or the like, but in specific spots - my head, the creases in my arm fold, striaght line down my chest. And though I feel hot, when I touch it its ICE COLD. Soooo bizarre. It happens in the middle of he night (umm, no, Im not in menopause yet! been checked-lol). I live in cold Boston (Quincy) and 4 homes up from the beach - its COLD. And I constantly leave the house without a coat cuz Im hot as Hades. Its terrible, but I thought it was maybe from medication. Who knows? haha - I just layer, layer layer my clothes. Another weird thing tho. no matter HOW hot I feel, ALL my joints - particularly my hips, knees and ankles are ICE COLD to the touch. Yes, indeed - Im a whacky woman with a whacky body...And Jim, God Bless you too.
Lauri

Nonna
01-23-2010, 05:48 PM
Ha! I think the 3 of you are lucky. I'm always wrapped up and have a space heater blowing on me all day. I can't get warm.

Nonna

scubagramplit
01-23-2010, 08:45 PM
I think we are all crazy, but I wouldn't want to be crazy with anyone but the people who are my family and friends here whl:) at least we all understand each other. I definetly include my wife and daughter in that group. they have to be to love me and take care of me through all this. At least for now I am feeling pretty good. Check out the raw food diet thread in lauries lounge, I have been doing that for 4 weeks now and am doing good, we will see how it continues while I keep tapering off the prednisone. Laurie, nice to meet you also and yeah I sweat at night also but lately not as often as I used to. Middle of last summer I would sweat so bad out side at work my shirt would be soaked from my shoulders clear down to at least my belly button area. I finally got over being embarassed about it. Nothing I can do about it so I might as well accept it. Yeah, crazy man:) Again God bless you and I wish you all well. sincerly, JIm.

Pipsi
01-25-2010, 12:04 PM
Hi Lauri,
I believe you know my Aunt Barb, she recommended that I go on this site and since yesterday when I signed up to become a member I am just beside myself that I am not alone during all of this. Truly this site must have been a God sent for me, as I feel sometimes I struggle alone. I have been in a flare up for several months now. I am weak, I was diagnosed with pleurisy and a partially collapsed lung, my lleft hand goes completely numb I drop things it wakes me up at night in excruciating pain, burning pain as well, blown up fingers like balloons, cold as anything, if I put it up or down it gets worse. I just contacted my neurologist, but I believe I have neuropathy right now. Just sometimes feels like there is no lite at the end of the tunnel, but I know there is hope and God gives me strength.

Thanks for sharing what you are going through and thanks to you all who also share as now I don't feel so alone in this. Lauri I was wondering if you wouldn't mind sharing the name of your neurologist? Aunt Barb told me that you have found a good one. I am currently on plaquenil but it is not cutting it anymore, I take Lyrica which has helped with the nerve pain in my hand. But my Rheumy feels I need more invasive medication thereapy or infussion therapy. I am very scared right now, I cry constantly, my family supports me but they live 4 hours away, my mother comes up as much as she can. She helps my sister alot with my 7yr old neice who has epilepsy! Thank you again ! for listening and giving me some will power to keep moving forward to getting all the right answers and all the doctors in place. Thanks so much Jess (Pipsi)

laurid8967
01-26-2010, 08:03 AM
Oh my gosh!! I am SO GLAD you found us here honey! If for nothing else, you will find love and suport from others who have been there (or are STILL there). I will absolutely send you a message with the neurologists name. Feel free to contact me any way you can honey. The WORST thing we tend to do with this disease is ISOLATE. It is such a relief when we find out that all our weird little symptoms are not so weird after all!!
I look forward to talking toyou honey - and hang in there!!
Lots of love honey
Lauri

SugarSnit
02-01-2010, 03:31 PM
Big hugs all around.

I deal with lupus that has hit my CNS... I have lots of neurological issues such as seizures and visual implications etc. I dont have much to add that others have imput other than to give lots of support and hugs.

love and light,
Melissa

ladybugs mommy
02-04-2010, 04:27 PM
sending big hugs!

yes, i have cns sle and it's not fun, but it gets better. i just had an MRI yesterday and the doctor there missed my port by a country mile so the contrast die when under my skin. then they gave me saline to help dissipate the die.. talk about pain! i'm still uncomfortable.

anyway, i do have lots of nuero symptoms - tremors, numbness, siezures, brain fog, memory loss, loss of balance, weakness in limbs, etc... i guess that's just how it goes with cns sle...??

anyway, i hope you all are having a flare free day!

laurid8967
02-05-2010, 08:14 AM
Just an update on me - decision is that these attacks were CNS lupus and inflammaiton of the blood vessels in the brain. I am feeling a bit better, my regular lupus sym are better as well (joints feel ok, fatigue better) all due to the 60mg prefdnisone. I am still having attacks, though, of HORRIBLE neurological pain - Oh. My. Gosh. Brutal. Hoping the Immuran gets that under some better control and I believe neuro may start me on Neurontin (as you spoke of earlier Rob). Just want some relief...you guys know what I mean....

I just started the taper to 40mg and I begin Immuran today. The prednisone is just not working as well as it should or has in the past. Besides, they obviously want me on the lowest dose possible - so starting Imuran.

I will start a new post about something the neuro told me the other day during my EMG about how doses of prednisone of 60mg or higher over a 2 week period can literally destroy parts of the brain responsible for memory! He is a really smart guy, so I believe this. Intersting...never knew that and - uummm...I do NOT need any more problems with my memory! Mine has been SO BADLY affected (as I know the majority of us here) by the lupus itself!

Anyway, thats the update with me - Ive have had in the past three weeks - EEG, 2 EMG, CT scan, CT-A, brian MRI, 2 lung xray, neck xray, and blood work up the wazoo...Almost over - 2 more EEGs and maybe lung CT (poss lupus pneumonitis again - but I dont think so - lungs feel better:) ) So - thank you guys, for always being here. I was a little concerned about the Imuran but the FIRST thing I did after leaving my doctor was come on this site to check on everyones experiences. It made me feel better. God, I am so grateful for this place...and all of you
God Bless

Lauri