Has anyone here had central nervous system involvement with their Lupus? If so can you tell me what and and how it has affected you? The reason I ask is because my neurologist is suspecting that some of my lesions on my spine may not be multiple sclerosis related as one has "disappeared" and that doesn't happen with MS. It was there and now is gone. Additionally I have intractable migraines I am treated for with seizure medication and am being told that Lupus can attack the brain in a similar fashion. looking for someone with similar issues that may be able to shed some light on my problem. Thanks in advance for any help.
Hi Draginfli,
Thanks for the reply and the info on asparteme, I had heard something but nothing specific, I'll look it up.
When I was talking with my neuro I asked if Lupus could "cause" lesions like MS, but what I failed to ask was ... did the lesions scar like the lesions of MS? In other words, is the fact that the lesion from 12 yrs ago on my spine no longer present as a plaq, the question mark. There is not much on the internet from medical journals published on CNS lesion involvement and Lupus, well the description of the lesion anyway. Who knows, they may not know.
I'll see her again at the end of April, still have to go back again for all my MRI's. I broke the machine the other day, lol.
ok, so I just had to go re-read everything cause I thought I was having a senior moment. But, Draginfli you say the lesions and seizures are not part of Lupus, is that what your docs say? If so what is that attributed to, your migraines? Tell me this isn't opinion based or is it?! ugh..........
I have had cns trouble---migraines that left me feeling like i was still missing a part of my brain for a few days after---the "lupus migraines" were such killers and demoral plus all the other stuff they gave me iv didnt help. finally i suggested a shot of steroids and they agreed. it worked. but I was still dazed after and could feel the nerve days after migraine stopped.
have trouble thinking straight sometimes, getting words out, weird visual issues lately =
Hi Kimberly,
I have brain lesions. In Aug 2009 I had a severe case of lupus meningitis (no bacteria or viruses were involved). I've never been so sick in my life (severe headache, vomiting, blurry vision). My rheumie and primary care docs had no idea what was wrong with me. After 3 weeks of being knocked flat (and losing 30 lbs) they sent me to the neurologist. She did a spinal tap and the fluid showed very high WBC and low glucose levels. The MRI showed at least a dozen brain lesions. The neurologist described these as scar tissue from broken inflamed blood vessels. She said they won't disappear and, in fact, last summer another MRI showed 2 new lesions.
Feel free to ask me questions!
Erica
Hi Kimberly,
If Lupus does attack the brain then it does scare the brain with leisons and what i can't understand is why treat you with seizure tablets unless there's signs showing this could happen and what meds they got you on for the seizures as i have epilepsy.
Kimberly here's a link which may help you.
http://lupus.about.com/od/relatedconditions/p/LupCNS.htm
I have CNS involvement with my Lupus where it's caused seizures/strokes and also severe headaches in the past but if i get to that stage now nothing moves them so i take a valium to help close the cells down in the brain.
All my love Terri xxx
Hi Kimberly,
I know this is an old post but I thought I’d share my experience with you anyway. I hope that by now they have figured out what your cns involvement is from. So here is my story… I’m 34 and was diagnosed in 2010 after I had an episode at work which landed me in the ER for a week. I was sitting at my desk when I had a sudden numbness which radiated down left side of my face and then continued down the left side of my body. I lost vision for a minute or so, my heart rate was at 140 bpm and I was convinced I was having a stroke. I had been getting migraines a few months prior which was definitely new to my world. I jhad been feeling really bad the weeks prior. By 3 pm I looked and felt dead, I could barely drive home from work. Anyway while admitted to hospital my neurologist whom I’m convinced was a god sent checked my Ana levels and they were 2465:1 which was off the charts. She was convinced I had lupus and recommended I see a rheumatologist. I did just that and was told by my first rheumatologist that I had mixed connective tissue disease and was placed on plaquenil after a few months of no relief.
I stayed on plaquenil for a year felt a little better and applied to nursing school. I was accepted and started fall of 2011. Finally my life was going in the right direction, or so I thought. Nursing was tough. Not the curriculum but the hours and dedication involved. I was absolutely exhausted and hurt everyday, more then normal. I was contributing everything to nursing school, everyone saiid they felt the same way. Well mine was obviously about to prove different then everyone elses problems in class. To make a long story short I was in school and my heart rate would just increase to upto 150 bpm for no reason, I would become clammy, dizzy and short of breath with chest pain and numbness in my arm. Of course having some medical information makes things much worse because you know what is going on and what exactly can happen and what needs to be done to stop it. Well back to the cardiologist and everything is fine. I swear they think I’m crazy. A few weeks later I was doing my clinical rotations and taking care of a patient when I got a migraine suddenly and it was unlike the previous migraines. I left, went home and went to bed. When I awoke my husband was home from work and I asked him to lay with me because I knew something was just I just couldn’t put my finger on it though.
I awoke to my husband in a panic…sitting me up on the side of the bed asking me what just happened! I had no clue what he was talking about, when I tried to answer I couldn’t speak. Not a word. I could understand everything he was saying but could not answer. Once again I thought Stroke but nope apparently I had seizure which I had never had before! After that started tremors, more and more migraines, vision problems, muscle weakness and spams, numbness in my limbs and all of the other fun stuff that comes with lupus.
While in the hospital they dosed me with an obscene amount of steroids so now my new rheumatologist could not diagnose CNS lupus. Apparently it is very difficult to prove CNS involvement and till this day my cardiac,neuro and joint pain still kick my butt everyday. I was forced to quit school:-( and do Nothing but rest. That’s not working out so well and still no diagnosis. I am scheduled for an MRI and MRA next week. So with fingers crossed maybe it will show something. I am convinced my CNS is involved! Sorry for the long story. Hope you are much better. I am taking keppra, inderal, Cellcept, plaquenil, prednisone, and just added today Ativan to help my CNS.
Wow...it's crazy how many bodily systems this affects and how our stories overlap. I get periods of R facial numbness and down my R arm at times. Always have had migraines. Lately,I'm getting burning, numbing pain down my L hip/leg and wraping around my abdomen at times. I've been thinking it's diabetic neuropathy but now I'm wondering. Should I be bringing a neurologist into my fold too? I also have problems with PSVT--heart rates up to 170-80's. Lost my job as a nurse due to it and my diabetes. I also tried to go back to school thinking if I had my BSN I could do more desk type work (admin which I would really hate--I'm such a hands on person). But I had to drop out due to getting worse and now have a $12000 student load to figure out how to repay on my humble SSDI....Sorry I got off track. Anyway...once again it's so nice to have this support group so you can see you are not alone in your experiences....thank you all for sharing. Gotta hit the hay! Love to you all.....
RD13 said:
Hi Kimberly,
I know this is an old post but I thought I'd share my experience with you anyway. I hope that by now they have figured out what your cns involvement is from. So here is my story..... I'm 34 and was diagnosed in 2010 after I had an episode at work which landed me in the ER for a week. I was sitting at my desk when I had a sudden numbness which radiated down left side of my face and then continued down the left side of my body. I lost vision for a minute or so, my heart rate was at 140 bpm and I was convinced I was having a stroke. I had been getting migraines a few months prior which was definitely new to my world. I jhad been feeling really bad the weeks prior. By 3 pm I looked and felt dead, I could barely drive home from work. Anyway while admitted to hospital my neurologist whom I'm convinced was a god sent checked my Ana levels and they were 2465:1 which was off the charts. She was convinced I had lupus and recommended I see a rheumatologist. I did just that and was told by my first rheumatologist that I had mixed connective tissue disease and was placed on plaquenil after a few months of no relief.
I stayed on plaquenil for a year felt a little better and applied to nursing school. I was accepted and started fall of 2011. Finally my life was going in the right direction, or so I thought. Nursing was tough. Not the curriculum but the hours and dedication involved. I was absolutely exhausted and hurt everyday, more then normal. I was contributing everything to nursing school, everyone saiid they felt the same way. Well mine was obviously about to prove different then everyone elses problems in class. To make a long story short I was in school and my heart rate would just increase to upto 150 bpm for no reason, I would become clammy, dizzy and short of breath with chest pain and numbness in my arm. Of course having some medical information makes things much worse because you know what is going on and what exactly can happen and what needs to be done to stop it. Well back to the cardiologist and everything is fine. I swear they think I'm crazy. A few weeks later I was doing my clinical rotations and taking care of a patient when I got a migraine suddenly and it was unlike the previous migraines. I left, went home and went to bed. When I awoke my husband was home from work and I asked him to lay with me because I knew something was just I just couldn't put my finger on it though.
I awoke to my husband in a panic...sitting me up on the side of the bed asking me what just happened! I had no clue what he was talking about, when I tried to answer I couldn't speak. Not a word. I could understand everything he was saying but could not answer. Once again I thought Stroke but nope apparently I had seizure which I had never had before! After that started tremors, more and more migraines, vision problems, muscle weakness and spams, numbness in my limbs and all of the other fun stuff that comes with lupus.
While in the hospital they dosed me with an obscene amount of steroids so now my new rheumatologist could not diagnose CNS lupus. Apparently it is very difficult to prove CNS involvement and till this day my cardiac,neuro and joint pain still kick my butt everyday. I was forced to quit school:-( and do Nothing but rest. That's not working out so well and still no diagnosis. I am scheduled for an MRI and MRA next week. So with fingers crossed maybe it will show something. I am convinced my CNS is involved! Sorry for the long story. Hope you are much better. I am taking keppra, inderal, Cellcept, plaquenil, prednisone, and just added today Ativan to help my CNS.
our stories are very similar! finally someone like me! lol ..
i would see a neurologist, it couldnt hurt. but if it is CNS lupus, good luck with getting them to say it. it seems like no one wants to commit. my primary said its so hard to tell CNS involvement until something major happens. but for you i hope you dont have it :) how long have you been a RN? i hope i go back in January to finish. feel better!
Ruth
PollyannaPam said:
Wow...it's crazy how many bodily systems this affects and how our stories overlap. I get periods of R facial numbness and down my R arm at times. Always have had migraines. Lately,I'm getting burning, numbing pain down my L hip/leg and wraping around my abdomen at times. I've been thinking it's diabetic neuropathy but now I'm wondering. Should I be bringing a neurologist into my fold too? I also have problems with PSVT--heart rates up to 170-80's. Lost my job as a nurse due to it and my diabetes. I also tried to go back to school thinking if I had my BSN I could do more desk type work (admin which I would really hate--I'm such a hands on person). But I had to drop out due to getting worse and now have a $12000 student load to figure out how to repay on my humble SSDI....Sorry I got off track. Anyway...once again it's so nice to have this support group so you can see you are not alone in your experiences....thank you all for sharing. Gotta hit the hay! Love to you all.....
RD13 said:Hi Kimberly,
I know this is an old post but I thought I'd share my experience with you anyway. I hope that by now they have figured out what your cns involvement is from. So here is my story..... I'm 34 and was diagnosed in 2010 after I had an episode at work which landed me in the ER for a week. I was sitting at my desk when I had a sudden numbness which radiated down left side of my face and then continued down the left side of my body. I lost vision for a minute or so, my heart rate was at 140 bpm and I was convinced I was having a stroke. I had been getting migraines a few months prior which was definitely new to my world. I jhad been feeling really bad the weeks prior. By 3 pm I looked and felt dead, I could barely drive home from work. Anyway while admitted to hospital my neurologist whom I'm convinced was a god sent checked my Ana levels and they were 2465:1 which was off the charts. She was convinced I had lupus and recommended I see a rheumatologist. I did just that and was told by my first rheumatologist that I had mixed connective tissue disease and was placed on plaquenil after a few months of no relief.
I stayed on plaquenil for a year felt a little better and applied to nursing school. I was accepted and started fall of 2011. Finally my life was going in the right direction, or so I thought. Nursing was tough. Not the curriculum but the hours and dedication involved. I was absolutely exhausted and hurt everyday, more then normal. I was contributing everything to nursing school, everyone saiid they felt the same way. Well mine was obviously about to prove different then everyone elses problems in class. To make a long story short I was in school and my heart rate would just increase to upto 150 bpm for no reason, I would become clammy, dizzy and short of breath with chest pain and numbness in my arm. Of course having some medical information makes things much worse because you know what is going on and what exactly can happen and what needs to be done to stop it. Well back to the cardiologist and everything is fine. I swear they think I'm crazy. A few weeks later I was doing my clinical rotations and taking care of a patient when I got a migraine suddenly and it was unlike the previous migraines. I left, went home and went to bed. When I awoke my husband was home from work and I asked him to lay with me because I knew something was just I just couldn't put my finger on it though.
I awoke to my husband in a panic...sitting me up on the side of the bed asking me what just happened! I had no clue what he was talking about, when I tried to answer I couldn't speak. Not a word. I could understand everything he was saying but could not answer. Once again I thought Stroke but nope apparently I had seizure which I had never had before! After that started tremors, more and more migraines, vision problems, muscle weakness and spams, numbness in my limbs and all of the other fun stuff that comes with lupus.
While in the hospital they dosed me with an obscene amount of steroids so now my new rheumatologist could not diagnose CNS lupus. Apparently it is very difficult to prove CNS involvement and till this day my cardiac,neuro and joint pain still kick my butt everyday. I was forced to quit school:-( and do Nothing but rest. That's not working out so well and still no diagnosis. I am scheduled for an MRI and MRA next week. So with fingers crossed maybe it will show something. I am convinced my CNS is involved! Sorry for the long story. Hope you are much better. I am taking keppra, inderal, Cellcept, plaquenil, prednisone, and just added today Ativan to help my CNS.
Hello everyone, thanks for the replies. Things have been a bit frustrating to say the least.
I have been to all the doctors, Rheum, Neuro, Derm, Primary, Oncologist.... Spent 30K in labs and radiology. All I know is I am IGM positive for antiphospholipids, ANA negative, have lesions on my brain and spine and still have Polycythemia Vera. I'm NOT happy with the University of Chicago, I went there to seek help because the local docs didn't know what to do with me. I am not seeing the "team of doctors" they claim to have working for me at all. All I get is come back in a month, take more tests. There is no plan, no direction, and no idea of what I have or what to do about what I have. I am contemplating going to Mayo with my 30K worth of tests results.
This is my life as it stands, every two weeks this is the cycle:
My feet swell like balloons, I become irritable, my joints start to ache, I begin to itch, the rash appears, could be in the sunny spots, all depends on how bad its gonna be. If its a bad cycle, its all over my body. I tingle on my face, my nose my lips, my forehead and eyes twitch on there own and I get the never ending headache. My migraines are controlled with the seizure med, don't miss a dose or your a goner. Then, I coat myself with the cortisone ointment along with the daily moisturizer and sunscreen to lesson the rash and the itch, the swelling turns to a deep purple ugliness till it goes away only to return in two weeks. In between, my mouth breaks out in sores. Oh freaking joy- but hey, this crap is all in my head right, because all my tests are negative. Other than my skin biopsy that came out with Tumid Lupus. I am now breaking out with discoid type lesions that leave scars along with the funky rash that goes all over my body.
I did get rid of the falling asleep at the wheel and constant energy loss, it was basically an overdose of effexor. I'm not sure if the constant tingling of my hands and feet and sharp pains are residual withdrawals from effexor or part of this unknown phenomenon I have. All I know is my energy level has increased dramatically and I do not sweat like a pig by just walking a flight of stairs anymore, and I'm not longer a public safety hazard driving in my sleep.
Still not happy with the medical profession in helping those of us with auto immune disease. Honestly even if they did diagnose me, I'm not inclined to take any of their immuno-modulating drugs, I tried the Betaseron when they misdiagnosed me with MS and it did nothing but make me have flu like symptoms. Wheres the quality of life folks, does anyone care about that? Don't they realize if we don't work, we don't have the money or the insurance to pay the dang bill!
Disheartened, feed up and thinking about finding a LUPUS only specialist, willing to pay the big bucks for a REAL specialist.
Kimberly
Kimberly said:
Hello everyone, thanks for the replies. Things have been a bit frustrating to say the least.
I have been to all the doctors, Rheum, Neuro, Derm, Primary, Oncologist.... Spent 30K in labs and radiology. All I know is I am IGM positive for antiphospholipids, ANA negative, have lesions on my brain and spine and still have Polycythemia Vera. I'm NOT happy with the University of Chicago, I went there to seek help because the local docs didn't know what to do with me. I am not seeing the "team of doctors" they claim to have working for me at all. All I get is come back in a month, take more tests. There is no plan, no direction, and no idea of what I have or what to do about what I have. I am contemplating going to Mayo with my 30K worth of tests results.
This is my life as it stands, every two weeks this is the cycle:
My feet swell like balloons, I become irritable, my joints start to ache, I begin to itch, the rash appears, could be in the sunny spots, all depends on how bad its gonna be. If its a bad cycle, its all over my body. I tingle on my face, my nose my lips, my forehead and eyes twitch on there own and I get the never ending headache. My migraines are controlled with the seizure med, don't miss a dose or your a goner. Then, I coat myself with the cortisone ointment along with the daily moisturizer and sunscreen to lesson the rash and the itch, the swelling turns to a deep purple ugliness till it goes away only to return in two weeks. In between, my mouth breaks out in sores. Oh freaking joy- but hey, this crap is all in my head right, because all my tests are negative. Other than my skin biopsy that came out with Tumid Lupus. I am now breaking out with discoid type lesions that leave scars along with the funky rash that goes all over my body.
I did get rid of the falling asleep at the wheel and constant energy loss, it was basically an overdose of effexor. I'm not sure if the constant tingling of my hands and feet and sharp pains are residual withdrawals from effexor or part of this unknown phenomenon I have. All I know is my energy level has increased dramatically and I do not sweat like a pig by just walking a flight of stairs anymore, and I'm not longer a public safety hazard driving in my sleep.
Still not happy with the medical profession in helping those of us with auto immune disease. Honestly even if they did diagnose me, I'm not inclined to take any of their immuno-modulating drugs, I tried the Betaseron when they misdiagnosed me with MS and it did nothing but make me have flu like symptoms. Wheres the quality of life folks, does anyone care about that? Don't they realize if we don't work, we don't have the money or the insurance to pay the dang bill!
Disheartened, feed up and thinking about finding a LUPUS only specialist, willing to pay the big bucks for a REAL specialist.
Kimberly
Still taking the plaquenil might as well be sugar pills, doesn't do a dang thing, but I take it in hopes that it might. Been on it for 3 months now.... that's what they said it would take to start to work...NOT working!
Hi Kimberly,
First of all i am sorry how they're stressing you out and feeling like your getting no where but regarding plaquenil i was on it for over a year and half it helped my DLE besides joint pain but i must have been expecting a miracle because after so long i thought it had'nt worked fully like you and it took 3mths to start working with me, then i went to Dapsone and was pulled off after 3mths affecting my organs and i've just gone back on the plaquenil till i see my new rheumo...try and bare with the plaquenil at least up to 5mths unless your taken off it otherwise because it's 6mths before it should work.
So they've diagnosed you with antiphospholipids syndrome he same as what i have..even though your ANA came back negative it does'nt mean to say you've not got it and lesions to occur are usually linked with Lupus anyway.
What they're doing is messing you about and keep going for bloods is'nt solving your problem...if you can afford it i'd go for a proper Lupus specialist like you said who only trains in that field of work because it's better than keep being messed about.
All the symptoms your suffering with regarding joints/nerves and skin issues are all what we get with Lupus and if you've told them this then they must be blind....well you just said it and none of it's in your head the biopsy showed Tumid...well that's what Deenie as and now she's got vasculitis and her doctor tests her regular for SLE and it keeps showing negative at the moment....good god you have all the signe of having it besides treatment to help you.
You do get leions on your skin that course scaring as i've got them on my neck, the lesions are actually called pigmentation scaring of lupus.
Kimberly you go for what suits you in getting sorted and i really wish you the best of luck my friend.
All my love Terri xxx