Central nervous system

anyone dealing with central nervous system involvement and depression or balance issues?

Yes, I am seeing a psychiatrist, depression has gotten worst. I have just dealt with the off balance issue. If you or anyone here can offer any information I would like to know more.

I’m recently diagnosed this past summer and while the doctor doesn’t seem to see any of my symptoms beyond “squishy joints” (so very disheartening), looking back over the past 10 years I am able to see many signs of this disease which have simply been attributed to getting old. For example the balance issues I underwent testing for returned nothing wrong however there was no lupus diagnosis all those years ago so, my balance problems are attributed to old age on my medical chart. So, yes I have balance issues which I believe are Lupus related. What tests have been done for you to determine central nervous system involvement?

I had a lot of CNS involvement including 2 TIAs before getting my body somewhat under control with my “cocktail.” Since getting the Imuran dosage correct, I have not had any more stroke symptoms. I have gone off of the Lyrica because the side effects just weren’t worth the risks and side effects of the medication itself.

I have not had balance issues. Sounds very difficult. I’ve had other difficult health concerns and depression too. It sounds far out, but for me, certain supplements greatly help depression. They are: B Complex, extra B 12, multi, extra D3 and Fish Oil. This works 90% of the time and I take these daily. If I have extra big trouble, I take a larger dosage of fish oil for a few days and extra b 6 for a few days as well. This does the trick. I know it might not be for everyone, but I’ve done very well with it and others I have suggested it to have as well.

I've been dealing with being depressed; and when I spoke about it with my rheumatologist, he explained that depression is extremely common with Lupus and suggested I seek help with it. I haven't really noticed any balance issues with me, because I'm clumsy anyways, lol, but I frequently have headaches and at one point had other symptoms that my rheumy said were signs of a CNS flare.

I do… sometimes balance issues and seizures. I wouldn’t say I am really depressed because I am very happy but some days I just can’t cope. It just hits hard and I feel I can’t keep going. My puppy has truly helped me!!! I think like others said I have to focus on him and not me all the time. Keeps my mind busy… Hope you feel better and get some answers! Like my doc. Said who wouldn’t have anxiety or feel a little down because we are constantly in pain and fighting this illnesse…

Yes. I feel like my whole nervous system is being attack. Dealing with severe depression, anxiety attacks, dizziness and forgetting things easily. I also find myself getting confused and not able to think straight.

Original diagnosis lupus cerebritis. Mood swings at the beginning were horrible with the upswing barely reaching normal and the downswing being awful. I still have balance difficulties occasionally and often bang into things. I am on seizure medication plus an immune suppressant and supplements much like Nomad suggested. At first I couldn't handle plaquinal but tried again later. That finally balanced the mood swings. It seems all of the treatments for Lupus take a long while to resolve the problems. I am finally learning to be patient and persistent. Its not like taking an asperin. It takes time. And it is really confusing! Very weird disease.

I had one of those days. I just have to laugh at, I will share it so you can see the humor in it. I was have a shot in my back today. I started out with my robe inside out. I then set in my recliner and waiting for medicine to kick in so I can move. I’m watching the news with dog on lap decide to pick her up and love on her. I started to hug her butt. Shot wrong end of dog. My husband tells me to please make another pot of coffee. I get out a filter then the sugar and almost pored it into the filter. We get to the dr. Office and I get on the table. The Nurse Says just to let you know your sweat pants are inside out. I then finally get to the reception to make another appt. Shot I forgot my purse…my husband holds it up in his hand and gives me the oh god look. He goes ahead to get the car why I wait on my prescriptions. I get to the elevator and there is a man in it I press the up bottom, oh I’m sorry I wanted to go down. The elevator door shuts. I press the down button. The elevator opens and there is the same man. I laugh say I’m sorry I press the correct floor. That man was not very pleased with my humor lol. The rest of the day I spent with one leg not working right so I stayed close to the bed.

Forgetting things easily…check reviews on Jarrow Brand PS 100. Used in Europe for ADD. All natural. Does help a bit with cognitive stuff from meds and illnesses. I haven’t had any side effects.

Yes, I have had CNS involvement with Acute Onset Transverse Myelitis. I was hospitalized for two weeks while being treated aggressively. Then I had physical therapy for several months. Happy to say I have only had the one episode, but it has left me with some permanent deficits. Hope you are feeling better, fightclub. Merry Christmas!

California Girl said:

Yes, I have had CNS involvement with Acute Onset Transverse Myelitis. I was hospitalized for two weeks while being treated aggressively. Then I had physical therapy for several months. Happy to say I have only had the one episode, but it has left me with some permanent deficits. Hope you are feeling better, fightclub. Merry Christmas!

my symptoms have been relentless,I have had brain mri which was negative,nerve conduction test which showed neuropathy in both legs,tons of bloodwork,and a test called a vng they cover your eyes and show lights and such this test was done by my ent doctor.This one came back positive for central nervous sytem involvement.My neurologist says the only definite way to tell is a brain biopsy,which he does not recommend.He says that the vng and all of the symptoms tells him plenty.As far as the depression goes they feel that it is actually like a chemical thing being caused by the lupus,he also said that a normal brain mri did not mean that cns wasn't involved .Physical therapy is brutal it is like a huge eye opener of what you can't do.So I focus on what I can do and all though I have definitely slowed some I never stop.I try very hard to keep stiff upper lip and I usually always succeed but I really miss my job and the cane thing really sucks,so I think I am going to ductape it some crazy color and just own it already,even though I am still not using it like I should ,knowing me I will probably wait and fall on my butt again ,hope I am smarter than that . I see a therapist and she has been my lifeline literally I see her three times a week,probably because I keep all of this bottled up to everyone around me.I really suck at asking for help.I recommend pt for balance it really does help.Thanks for tips on vitamins going to run that by doctors,zippy you made me smile ,some days that's all we can do is laugh at ourselves.Like everyone at the pt thinks I have a drinking problem and I don't really touch alcohol .So what kind of symptoms does transverse myelitis have.So the balance issues are crazy but everyone hang in there it will get better,yep it might come back so get ready to fight it.My cognitive issues are crazy,hoping it was menopause doc said nope I try and laugh about that too sometimes laughter isn't what comes welling up but a good cry I have learned is okay I am pretty locked up in front of others though,Doc says I have superwoman syndrome but my cape is getting a bit heavy.Hang in there with all of these symptoms prayers for all it's so nice to have people to talk to now thank you for letting me vent please get a hug today and have a wonderful Christmas.By the way I need to get in the habit of checking this more because I really don't sleep much steroids wire me up bigtime,so wanna correspond please do would love it. Please take care this is one nasty disease but mind over matter and I always say my mind matters so do what you gotta do to help yourself feel better I go to barnes and nobles and get a frap I love it there.hugs to all.

Yes the twitching i getwith it is so bad. Make sure u dont drink caffeine its a cns stimulator. Also choroprator has helped be careful with it though let them know u have cns involvement


Be grateful that you are self aware enough to ask that question. There are many lupus patients that are in denial, or may actually suffer from anosognosia - the inability to be aware of one's own deficit, and that is absolute hell for their loved ones. The diagnosis can be incredibly difficult. I am not my wife's health proxy and there is no HIPAA waiver in place, but there are two children involved, paranoia, psychosis, and reduced cognitive function. In her paranoia, she filed for divorce and our children are living with her. She thinks that she is fine, and that I am the problem. Lupus is truly a family disease and I didn't realize this until too late. I have worked very hard at understanding how this disease affects her and how it has affected our family. This is not what either of us had envisioned or wanted. She did not want any of this and neither did I. In my understanding, I have been able to forgive her for how she has treated our children and I.

In my studying of her disease, I realized that the National Institute of Health has identified that 75% of SLE patients will at some point experience neuropsychiatric symptoms while the American Academy of Neurology puts that number at 90%. Lupus is a disease that is so hard to identify and diagnose for so many clinicians because it presents so differently for each patient. In the case of my wife, I truly hope that as we proceed through our custody battle, that she can get her official diagnosis, and the help that she needs. This is the only venue available for me to be of any help to her, and attorneys and judges are far less familiar with the presentations of this disease than clinicians are.

I hope that this serves as a guide for those who have loved ones involved. I hope that it never gets as bad as this for any of you, but no marriage is perfect, and no one can know the future. Hiding in denial is not an effective solution either. Education for yourself and your loved ones is important, HIPAA waivers and health proxies are even more important if there are children involved.

This is talking about ME!!! Funny that you should mention this!! Me and a couple of my family was speaking on this topic just Thursday and yes am a wreck totally somedays! But I do my best to make the days to be okay for the most part. Eventhough my grand kids know when am not up to hearing the noise which drives me completely crazy. Am all over the place and taking the 3 meds from the psyc doctor helps if the house is quite well some what …Beverly L.

Honestly I am in trouble ,went to main doctor today and she wasn't happy that I want to stop the methotrexate,yet she has mentioned cellcept since February.So now she said my issues are all neurological and that my neurologist needs to decide on medicines,which he suggested rimtuxin months age don't know if I spelled that right,anyway she says she is going to call him and I have to have bloodwork first before any new meds.The methotrexate injections cause worse joint pain for two days and I feel wiped out and after four or more months I have had enough and neurologist agrees.Anyway I am getting worse by the day total exhaustion and weakness,pain balnce is terrible looks like I have to use the darn cane more tremors and speech I stutter like crazy and headaches.So I guess it had to get to this point for them to move which is still not fast enough for me.I am trying to hold it together but I feel like I am crumbling inside anxiety attacks which no one knows except therapist and my mom I have just had it I feel like I am going tgo lose it completely which scares the hell out of me because I was actually so low back in September that I felt suicidal which is embarrassing but true if anyone can help please do I am really scared and it is getting harder to hide.My neurologist thinks the lupus needs to be stopped and my rheumy feels the symptoms need to be addressed I go back to the lupus center in Pittsburgh but not until Feb. I will never make it that long help any support will be great because I am really falling apart.


Given the symptoms that you described, they sound very consistent with Lupus CNS vasculitis, and while I am not a doctor, I have looked into this very closely because I believe that it is what my wife experiences. If I am correct than you are right to think that you can't wait. CNS vasculitis is both Lupus and a Neurological issue. Simply said, it is when lupus inflames the walls of the blood vessels in your brain, and it reduces blood flow. There are many nasty psychiatric conditions that can present especially psychosis and suicidal ideation. Untreated, it could lead to stroke. My best advice is to print out http://my.clevelandclinic.org/health/diseases_conditions/hic_central_nervous_system_vasculitis, go to the emergency room and get evaluated right away as these symptoms can progress rapidly, especially since your doctors have advised stopping the only anti-inflammatory medication that you mentioned being on. .

going to start cellcept now and am also on 15 mg predisone a day anxiety is very high I don't sleep much nights are really brutal,other meds in the mix but off of methotrexate and plaquneil.I just don't understand where my head is at one minute I am fine the next minute I feel so low all I can do is cry gotta get myself picked up again this is definitely not me.