Sorry for worrying you mate but this lot really took hold of my chest, i really have to watch fumes etc now or i'm in a coughing fit.lol
Love ya loads mate as you know. xxx
whathappensinvegas said:
Hi there, girl!
I've missed you (and been worried) So glad you are back with us. You know I never mind you adding as I have learned so much from you...especially the being brave and proactive.
Thanks so much for sharing.
XOXO,
DeAnne
Tez_20 said:
Hello DeAnne,
Great discussion brought up here and Lupus when being diagnosed, again stems from the CNS, that's why our minds go anyhow and myself for one can vouche for this being under psychiatric treatement for years besides diagnosis to different ailments in that field.
It helps members understand the reason to why so many mind problems are occuring.
The link below also explains alot if you don't mind me adding it :) xxx
Sorry but i totally disagree actually with family members informing anyone through mental or a psychotic episode because if members have never been down the line of psychiatric treatment then quite a few things can happen according to the doctor who is involved besides family members.
If it was up to my moms eldest sister i'd have been locked up years ago at the age of 21, through no fault of my own, just doctor's wrongly diagnosing plus alot of members on here have family who don't understand what they're suffering with Lupus never mind psychotic episodes.
"I totally recommend if a member does'nt feel well get intouch with someone you can totally trust"
siskiyousis said:
Actually i agree with all you say....i often answer when i am really tired and maybe do not get what i am trying to say across the best way.
Anyone having any kind of new symptoms be it mental or physical should have either family or friend notify your doctor if you are not able. I just was trying to inform other like if you are having mental issues and it is friend they will need to have legal rights to make any choices for you which might be excellent thing to set up if people do not have family as support. Plus what will possibly could happen to them and how to prepare for it ahead of time to get the best care possible.
I still think the numbers are low. Or i look at it that i have been in SLE groups since 80's and yet to have heard of one person who actually had psychotic episode. I have met where it does effect their brain which was physical not mental issue. numbers bounce to highest being 5 but often state 2%.
I also did speak about this since one of people who i had to admit was family member so since both my brother and I had auto immune diseases, i brought up to doctor about if this could be caused by SLE. I was told that it is extremely rare, in fact that this doctor and all doctors he knew in Bay area had not seen one real case of psychosis due to lupus. That was just his professional opinion as well as psychiatrist who is excellent.
But sure the numbers change as they know more and more about this. I also know that some people over worry about possibility of it happening to them so i like to try and calm those kind of people down. Yes we all should be aware about it but odds are i believe, that it is not likely to happen. Maybe i am just optimistic or am one of those that kind that believe strongly about body mind connections...so i rather think odds are in my favor and most others too!! : )
whathappensinvegas said:
I totally understand where you are coming from, siskiyousis, however 5% is still 1 in 20. Not such a small number when looked at that way in my opinion.
While it was explained to me that most episodes will hit during a particularly bad "flare", left untreated it could become a complete break. This is what I was trying to get across, that if you are experiencing or others around you are noticing severe changes in your mental processes, you need to see your doc immediately and NOT brush it off as a side-effect.
My background is in education and my specialty was students with EBD (Emotional and Behavioral Disabilities) for the San Diego Unified School District. The reason I mention this is because I do have extensive experience with working with people with several diagnosed psychiatric-only issues. So, on that I am going to have to politely disagree.
I do agree that our meds can cause a range of issues that affect our cognitive ability and mental accuity. This is why I wanted to let people know that ANY change from that normal "fog" need be addressed immediately.
I think that we have enough to deal with with the physical limitations put on us with this disease. Faulty mental processing means that we forget to take our meds, overtake our meds, forget appts, are irritable, angry...just to name a few. These things are crucial to our overall health and faulty mental processing means we are not doing all we can to be proactive in our own care. No one knows what we are feeling if we are afraid to tell them.
I hope that those that read this realize that others have had episodes like this and aren't afraid to mention them to your doctor. Although most won't require anti-psychotic meds and may just require a change to current meds, some may be more severe. Do NOT wait until it is too late to reverse or stop any damage.
Big thanks to everyone for sharing. I know it's not easy and every one of you are incredibly brave!
Now that you mention it... I have had several of the symptoms mentioned here. I already knew that Lupus causes psychosis, having read that little goodie in a medical journal. It explains the bizarre behavior I was experiencing during the years I went thru Menopause. I almost shot my husband once. Finger on the trigger, gun aimed right at him. i can't even remember why I was so angry with him now. (There are now no guns in the house, but I also have more control over my mind and body, for the most part) I know when I let the dogs in the house, sometimes I can't see them come in. They will be outside, then I turn around, and they are in the house. It is very bizarre, but I am getting used to it now.
My husband works all over the country and I told him I wanted a gun for protection...well as you can imagine with some of my recent symptoms, that went over like a "lead balloon". He's open to a taser and we have really good security, but between the lupus and peri-menopause (which can last up to 10yrs), a lethal weapon is out of the question and out of the house, lol.
I would not have known about this symptom of lupus if not for my Rhuemy as very little is written about it. With up to 3M people world-wide sufferering from this disease, I think it's worth noting. She specializes in Lupus and taught at the med school at UC Irvine specifically about Lupus. That hopefully means that more future Rhuemy's will be aware of this phenomenon and that, according to the article posted by Tez_20, is often reversible. That is the best news.
Thanks so much for sharing!
DeAnne
RJQ said:
Now that you mention it... I have had several of the symptoms mentioned here. I already knew that Lupus causes psychosis, having read that little goodie in a medical journal. It explains the bizarre behavior I was experiencing during the years I went thru Menopause. I almost shot my husband once. Finger on the trigger, gun aimed right at him. i can't even remember why I was so angry with him now. (There are now no guns in the house, but I also have more control over my mind and body, for the most part) I know when I let the dogs in the house, sometimes I can't see them come in. They will be outside, then I turn around, and they are in the house. It is very bizarre, but I am getting used to it now.
Regarding whether doctors believe it’s common or not, we have to always remember that many doctors cling to what they were taught (which may be outdated) or what they have read on an issue (which may be incomplete or outdated or both!) When I found out I had SLE, I did a ton of searching and reading about it. It was rare to find anything mentioning neuropsychiatric symptoms beyond brain fog. I googled for psychiatric issues in lupus because I had a history of inadequately explained mental health problems (a diagnosis and treatment, neither of which quite fit.) My search led me to Dr. Clark (Michael) Neuwelt right in the SF Bay Area. He has a special interest in NPSLE (an actual lupus subgroup such as lupus nephritis, but not a separate form as in cutaneous lupus… Just a description of where your SLE is active.) Part of his goals other than treating and understanding how NPSLE works is to raise awareness among doctors (who for the most part are clueless or dismissive about it) and especially early identification so something can be done before it’s too late for the brain to recover. Many doctors in the old-guard assume psychiatric complications occur late in the disease course and dismiss it probably just side effects from the meds. Dr. Neuwelt proposes that for many new SLE patients it actually may be one of their earliest symptoms to appear, which would lead to missing the diagnosis when it’s called purely psychiatric. This seems to apply to my case.
My major episode happened before ever taking any lupus meds, 2.5 years before being diagnosed with SLE. So, siskyousis you know of one, I had a delusional psychotic episode that lasted for 6 weeks and required two separate week-long rounds of antipsychotic medication, at age 22. I wasn’t hospitalized because I wasn’t dangerous and my family decided to handle it at home, but I had to stay with my mom for 2 months because I couldn’t even take care of my basic needs like getting myself to eat! There was also concern that I might become suicidal with how depressed I was and the increasing delusional thinking, but being among family took away the risk. It could have been from plain old bipolar disorder, which I have family history of and that I was in the midst of being evaluated for, but it occurred along with a major SLE flare (still undiagnosed) and was very atypical for a plain bipolar episode. This is a major problem of having rheumatologists send us off to psych assuming its a separate issue, or psychiatrists not knowing enough about illness-related mental complications, since a lupus-related episode would need immunosuppressants along with antipsychotics and could be causing physical brain damage. Although I did have a high single dose of steroids for an injury 5 years prior, I had (milder) mental health issues before that as well, it probably wasn’t steroid-related psychosis, since that usually results from longer-term use (now I’ve been on 20mg prednisone equivalent for 3 months and my brain is working better… So that gives more evidence for lupus-related causes. Of course it’s possible I have two issues going on that merely trigger each other (both lupus and bipolar are notoriously triggered by stress and lack of sleep, and both also cause loss of sleep and significant stress… I also have fibro and that factors in the same way! Like I said, more doctors need to be aware of the complexity and patients need to be aware of the possibility in order to get identified and treated properly. It’s hard enough having all these problems, so having nobody be able to help solve it is devastating! Finding Dr. Neuwelt has been such a major saving grace because he legitimized my concerns and tested for lupus involvement (spinal tap showed inflammation, brain MRI showed some early damage but minor, and we’ll get a report back shortly from a neuropsychology evaluation.)
I’ve posted links before to his articles as well as a Cleveland Clinic article that explains NPSLE very well, but I’ll have to go back and find it on my old account I got locked out of. I’ll get those reported here soon, but for now I have to run to a doctor’s appointment!
I was diagnosed in 1986 as a psychopath and that still follows with me today and i've mentioned this with how RJQ went with a gun in her hand.
My temper is way out of control, my hubby always says i'm a lit fuse and what he's took of me when i've actually lost the plot is bad and to this day he's still with me...the question WHY?? travels with me daily.
I've been wild since a child and knowing now i was born with the lot from birth...it's been destroying me over the years, besides mentally but physical also.
I have to admit we have alot of features similar and i definitely agree about psychiatric doctor's they're not upto scratch like they should be.
I just loved reading your honesty and knowing i've not been alone down the line. :)
Brynn said:
Regarding whether doctors believe it's common or not, we have to always remember that many doctors cling to what they were taught (which may be outdated) or what they have read on an issue (which may be incomplete or outdated or both!) When I found out I had SLE, I did a ton of searching and reading about it. It was rare to find anything mentioning neuropsychiatric symptoms beyond brain fog. I googled for psychiatric issues in lupus because I had a history of inadequately explained mental health problems (a diagnosis and treatment, neither of which quite fit.) My search led me to Dr. Clark (Michael) Neuwelt right in the SF Bay Area. He has a special interest in NPSLE (an actual lupus subgroup such as lupus nephritis, but not a separate form as in cutaneous lupus... Just a description of where your SLE is active.) Part of his goals other than treating and understanding how NPSLE works is to raise awareness among doctors (who for the most part are clueless or dismissive about it) and especially early identification so something can be done before it's too late for the brain to recover. Many doctors in the old-guard assume psychiatric complications occur late in the disease course and dismiss it probably just side effects from the meds. Dr. Neuwelt proposes that for many new SLE patients it actually may be one of their earliest symptoms to appear, which would lead to missing the diagnosis when it's called purely psychiatric. This seems to apply to my case.
My major episode happened before ever taking any lupus meds, 2.5 years before being diagnosed with SLE. So, siskyousis you know of one, I had a delusional psychotic episode that lasted for 6 weeks and required two separate week-long rounds of antipsychotic medication, at age 22. I wasn't hospitalized because I wasn't dangerous and my family decided to handle it at home, but I had to stay with my mom for 2 months because I couldn't even take care of my basic needs like getting myself to eat! There was also concern that I might become suicidal with how depressed I was and the increasing delusional thinking, but being among family took away the risk. It could have been from plain old bipolar disorder, which I have family history of and that I was in the midst of being evaluated for, but it occurred along with a major SLE flare (still undiagnosed) and was very atypical for a plain bipolar episode. This is a major problem of having rheumatologists send us off to psych assuming its a separate issue, or psychiatrists not knowing enough about illness-related mental complications, since a lupus-related episode would need immunosuppressants along with antipsychotics and could be causing physical brain damage. Although I did have a high single dose of steroids for an injury 5 years prior, I had (milder) mental health issues before that as well, it probably wasn't steroid-related psychosis, since that usually results from longer-term use (now I've been on 20mg prednisone equivalent for 3 months and my brain is working better... So that gives more evidence for lupus-related causes. Of course it's possible I have two issues going on that merely trigger each other (both lupus and bipolar are notoriously triggered by stress and lack of sleep, and both also cause loss of sleep and significant stress... I also have fibro and that factors in the same way! Like I said, more doctors need to be aware of the complexity and patients need to be aware of the possibility in order to get identified and treated properly. It's hard enough having all these problems, so having nobody be able to help solve it is devastating! Finding Dr. Neuwelt has been such a major saving grace because he legitimized my concerns and tested for lupus involvement (spinal tap showed inflammation, brain MRI showed some early damage but minor, and we'll get a report back shortly from a neuropsychology evaluation.)
I've posted links before to his articles as well as a Cleveland Clinic article that explains NPSLE very well, but I'll have to go back and find it on my old account I got locked out of. I'll get those reported here soon, but for now I have to run to a doctor's appointment!
All you can do is to hold yourself steady. You are the one ultimately responsible for how you act, so you HAVE to hold on to yourself. This disease is a monster, but we must strive not to be one because of it. I hope this makes sense. Because we have Lupus is not a license to kill. LOL! This sounded funny to me at the moment, but, trust me, I know it isn't really.
Tez 20, it sounds like you have a very good husband. I suppose I do too, but am mad at him at the moment, so am not gonna say so.
Hang in there, girl. Hang in there. And treat your hubby as best as you can.
Tez_20 said:
Hi RJQ / DeAnne,
I was diagnosed in 1986 as a psychopath and that still follows with me today and i've mentioned this with how RJQ went with a gun in her hand.
My temper is way out of control, my hubby always says i'm a lit fuse and what he's took of me when i've actually lost the plot is bad and to this day he's still with me...the question WHY?? travels with me daily.
I've been wild since a child and knowing now i was born with the lot from birth...it's been destroying me over the years, besides mentally but physical also.
I have a game holding back so now adays it's my mouth and high ratedness is unbelieveable, then pressure in the head develops, christ the combination going on is enough to drive we soft.
I won't let the diseases beat me, been through to much with strokes, epilepsy etc.
Well we're two lucky ladies to have lovely understanding hubbies, my hubby walks into another room when my fuse is going, he knows i love him besides all the history behind me and often says alot of it could have been handled better through the years.
All through doctor's jumping the gun and messing me up besides :)
RJQ said:
All you can do is to hold yourself steady. You are the one ultimately responsible for how you act, so you HAVE to hold on to yourself. This disease is a monster, but we must strive not to be one because of it. I hope this makes sense. Because we have Lupus is not a license to kill. LOL! This sounded funny to me at the moment, but, trust me, I know it isn't really.
Tez 20, it sounds like you have a very good husband. I suppose I do too, but am mad at him at the moment, so am not gonna say so.
Hang in there, girl. Hang in there. And treat your hubby as best as you can.
Tez_20 said:
Hi RJQ / DeAnne,
I was diagnosed in 1986 as a psychopath and that still follows with me today and i've mentioned this with how RJQ went with a gun in her hand.
My temper is way out of control, my hubby always says i'm a lit fuse and what he's took of me when i've actually lost the plot is bad and to this day he's still with me...the question WHY?? travels with me daily.
I've been wild since a child and knowing now i was born with the lot from birth...it's been destroying me over the years, besides mentally but physical also.
You took every thought my poor in-coherant brain has, and emotion, and just put it eloquently down for me. Thank you. For that reason I may simply say "DITTO!" instead of trying to get my once amazing brain to regurgatate these things. THANK YOU.
Brynn Lydum said:
Well said! I'm currently in the thick of sorting these things out... I'm recently diagnosed (in the last year), but with longstanding mental health challenges including a particularly bad episode of psychiatric trouble as one of the elements that supports the SLE diagnosis! It was treated as a purely psychiatric issue at the time, and only now is being re-examined in light of having definite SLE. I also have a family history of psychiatric illness, so I may simply fall into both camps at once... Wow, did i just say "simply"? Actually nightmarishly complicated, which is where those coping strategies you listed are so essential!
I find myself in the position of wondering whether my lupus treatment will alleviate it to some degree and allow reducing use of psych meds, whether I need to continue or escalate the psych meds, and whether I will respond well enough to either one to get on with life in decent shape! In all cases, I'm seeking out coping strategies and extra counseling to keep mental/emotional agitation from worsening my physical health and vice-versa. It's so hard to grasp even for myself (and I tend to be highly introspective, plus hold a degree in neuroscience...) and nearly impossible to communicate to others who are fortunate to have their mind, just as their body, work pretty much the same way all the time.
Some people I've encountered are simply too impatient or inflexible to understand, compassionately support, or even just tolerate the challenging mental and behavioral states I go through, while others seem to intuitively know what I need and intervene in just the right ways. I love to have those amazingly helpful and kind people around me, and desperately fear wearing them out! (and of course the anxiety I have over stressing them out makes me freak out even more... Working on breaking that cycle as a top priority!) I'm slowly learning not to waste sweat and tears trying the impossible task of winning over the ones who don't or won't get it... But I hate having someone walk away thinking terrible things about me that aren't a fair judgment. So, in the midst of these challenging periods, when I should just be doing everything possible to recover, I'm frantically trying to reduce my impact on others and feeling self-conscious of what still others think of me! I'm sure everyone on this site knows THAT sinking feeling...
I try to focus on successes, of which awareness certainly is a major one, but it's hard not to feel like I keep falling short! It adds even more stress as I watch the drama unfold like I'm in a movie with no pause button, with recurring scenes of disappointment and heartbreak that I've been through too many times but can't seem to alter yet despite my growing awareness. (I understand cognitive-behavioral therapy is aimed at discovering that pause button I've never been able to find, so I'm getting into it finally after years of thinking I should!) Becoming aware of everything without having many tools to address it has been a really painful time, and I feel horribly misinderstood by most people, but looking back it's actually not as tough as a lot of my past. Sometimes I even succeed at being patient and kind with myself and proud of how much progress I'm making all the time in learning to cope, not only with my illness but also myself! Being here sharing wisdom with people who actually get it firsthand makes me feel like I've been granted a code-breaking manual. It's been an invaluable source of support and clarification of what I can and can't control. My tendency is to try to control everything while feeling totally out of control, so it helps a lot that I'm learning to let (some) things go.
Most of all it's hard to accept the paradox that it's not my fault these things wash over me, yet it's my responsibility to handle them if I want a good life for myself to live and to bring good to others. It gets exhausting being expected to be a superhero when I feel totally broken. I battle with bitterness towards those who don't have to work so hard just to go on daily (thinking "if you think it's so hard on you dealing with me, try imagining how it feels BEing me, being trapped in this malfunctioning body and even mind, and expected to contain the damage from all the stronger people around me who can't be bothered to help or at least wait it out!") I recently expressed to a potential romantic partner (that wasn't working out, as usual, and thus I could feel more comfortable to say what I really think in discussing how he could be "just a friend") that what I REALLY want is someone who realizes how excruciatingly hard I have to work to accomplish anything, even something that comes out looking more like a mess than a success, who then truly wants to work even a fraction of that amount to make things a little easier for me. Because I know I can do and give and incredible amount when I have the support to be who I'm meant to be. I just need a lot more help to get there!
Thanks for help you all lend with your words; they have such an impact and I feel so enabled when I can do the same by sharing my stories and reflections in return! Now if the rest of the world would just figure out that dynamic ;) (well, actually, I hear community-based living and extensive mutual support are common in some other societies, or subcultures within this country, but it certainly isn't popular in the context of mainstream American individualism! But that's another rant entirely...)
Brynn (you can find older posts under that screen name that I got locked out of)
I am lucky as well in having a wonderful supportive husband. Brynn, you are awesome for posting and for finding that info to share. I can't wait to see the articles.
The one that Terri posted said something like up to 80% of lupus sufferers will experience some form of NP lupus during the course of the disease, especially early on. I find that frightening as for someone like me, who is NOT ANA positive, the mental/psychiatric symptoms could have been used as a diagnostic tool had any one of the 30 doctors I have seen over the last decade bothered to look beyond the "symptom" to the actual disease.
I, too, got diagnosed with epilepsy after a seizure in 2003.
I am absolutely stunned, reading back on this post, at how many of us have had these same symptoms, yet didn't realize it is (or could be) disease related. I am so pleased that everyone feels comfortable enough to share our stories which don't necessarily paint us in a favorable light.
Although this disease affects everyone differently, it appears that if we were to conduct our own study, we are probably experiencing more of the same symptoms than we ever realized.
I have a game holding back so now adays it's my mouth and high ratedness is unbelieveable, then pressure in the head develops, christ the combination going on is enough to drive we soft.
I won't let the diseases beat me, been through to much with strokes, epilepsy etc.
Well we're two lucky ladies to have lovely understanding hubbies, my hubby walks into another room when my fuse is going, he knows i love him besides all the history behind me and often says alot of it could have been handled better through the years.
All through doctor's jumping the gun and messing me up besides :)
RJQ said:
All you can do is to hold yourself steady. You are the one ultimately responsible for how you act, so you HAVE to hold on to yourself. This disease is a monster, but we must strive not to be one because of it. I hope this makes sense. Because we have Lupus is not a license to kill. LOL! This sounded funny to me at the moment, but, trust me, I know it isn't really.
Tez 20, it sounds like you have a very good husband. I suppose I do too, but am mad at him at the moment, so am not gonna say so.
Hang in there, girl. Hang in there. And treat your hubby as best as you can.
Tez_20 said:
Hi RJQ / DeAnne,
I was diagnosed in 1986 as a psychopath and that still follows with me today and i've mentioned this with how RJQ went with a gun in her hand.
My temper is way out of control, my hubby always says i'm a lit fuse and what he's took of me when i've actually lost the plot is bad and to this day he's still with me...the question WHY?? travels with me daily.
I've been wild since a child and knowing now i was born with the lot from birth...it's been destroying me over the years, besides mentally but physical also.
Mindy, I'm sorry to hear you're feeling the loss of mental functioning... I get that way too and I'm glad to be having a better time of it these days. Reading how clear my writing is write now I'm pretty happy to see I'm doing a lot better than some other times! There may be things to help you too, and please browse through these links I dug out of an older post about NPSLE:
Diagnosis/management advice (for medical professionals, but very informative to patients!): "Managing Neuropsychiatric Lupus: Top Ten Clinical Pearls" By C. Michael Neuwelt (that's the expert rheumatologist) and Robyn G. Young (a neurologist he works with in his research)
This Cleveland Clinic article on lupus as a whole has a very informative section on NPSLE (scroll down to Neuropsychiatric, the ninth heading down under the "Clinical Presentation" section, just after a long section on gastrointestinal) It's also directed at clinical professionals, but it's pretty clearly written.
Medscape has a really helpful entire article as well, and though you need a login, it's free. I use Medscape for reliable info about all kinds of things. It's made for doctors to reference, so it's pretty detailed and full of medical jargon, but the most current and accurate you can find!
Btw, this is still Brynn, I just realized I was using my full name instead of a screen name. Oops. Doesn't matter much to me if you guys know who I am, but I do like this nickname anyhow and it's always smart to be careful with what you publish on the internet about such sensitive topics...
Faladora said:
Mindy, I'm sorry to hear you're feeling the loss of mental functioning... I get that way too and I'm glad to be having a better time of it these days. Reading how clear my writing is write now I'm pretty happy to see I'm doing a lot better than some other times! There may be things to help you too, and please browse through these links I dug out of an older post about NPSLE:
Diagnosis/management advice (for medical professionals, but very informative to patients!): "Managing Neuropsychiatric Lupus: Top Ten Clinical Pearls" By C. Michael Neuwelt (that's the expert rheumatologist) and Robyn G. Young (a neurologist he works with in his research)
This Cleveland Clinic article on lupus as a whole has a very informative section on NPSLE (scroll down to Neuropsychiatric, the ninth heading down under the "Clinical Presentation" section, just after a long section on gastrointestinal) It's also directed at clinical professionals, but it's pretty clearly written.
Medscape has a really helpful entire article as well, and though you need a login, it's free. I use Medscape for reliable info about all kinds of things. It's made for doctors to reference, so it's pretty detailed and full of medical jargon, but the most current and accurate you can find!
I am very glad to see how everyone has opened up so much on this forum. Wow, it is releasing to see how others here have gone thru the same things I have. I love the honesty, love feeling I can BE honest with you! It is therapeutic to open up.
My husband just bites his tongue when I start going off. It is very hard to shut up when I am right, you know. (VBG)
Tez_20 said:
Hello RJQ,
I have a game holding back so now adays it's my mouth and high ratedness is unbelieveable, then pressure in the head develops, christ the combination going on is enough to drive we soft.
I won't let the diseases beat me, been through to much with strokes, epilepsy etc.
Well we're two lucky ladies to have lovely understanding hubbies, my hubby walks into another room when my fuse is going, he knows i love him besides all the history behind me and often says alot of it could have been handled better through the years.
All through doctor's jumping the gun and messing me up besides :)
RJQ said:
All you can do is to hold yourself steady. You are the one ultimately responsible for how you act, so you HAVE to hold on to yourself. This disease is a monster, but we must strive not to be one because of it. I hope this makes sense. Because we have Lupus is not a license to kill. LOL! This sounded funny to me at the moment, but, trust me, I know it isn't really.
Tez 20, it sounds like you have a very good husband. I suppose I do too, but am mad at him at the moment, so am not gonna say so.
Hang in there, girl. Hang in there. And treat your hubby as best as you can.
Tez_20 said:
Hi RJQ / DeAnne,
I was diagnosed in 1986 as a psychopath and that still follows with me today and i've mentioned this with how RJQ went with a gun in her hand.
My temper is way out of control, my hubby always says i'm a lit fuse and what he's took of me when i've actually lost the plot is bad and to this day he's still with me...the question WHY?? travels with me daily.
I've been wild since a child and knowing now i was born with the lot from birth...it's been destroying me over the years, besides mentally but physical also.
I loved reading your reply here. Thanks, to you and everyone else here.
whathappensinvegas said:
RJQ & Tez_20,
I am lucky as well in having a wonderful supportive husband. Brynn, you are awesome for posting and for finding that info to share. I can't wait to see the articles.
The one that Terri posted said something like up to 80% of lupus sufferers will experience some form of NP lupus during the course of the disease, especially early on. I find that frightening as for someone like me, who is NOT ANA positive, the mental/psychiatric symptoms could have been used as a diagnostic tool had any one of the 30 doctors I have seen over the last decade bothered to look beyond the "symptom" to the actual disease.
I, too, got diagnosed with epilepsy after a seizure in 2003.
I am absolutely stunned, reading back on this post, at how many of us have had these same symptoms, yet didn't realize it is (or could be) disease related. I am so pleased that everyone feels comfortable enough to share our stories which don't necessarily paint us in a favorable light.
Although this disease affects everyone differently, it appears that if we were to conduct our own study, we are probably experiencing more of the same symptoms than we ever realized.
Well i was on the sjogrens site lastnight and looking at info besides and it seems that these episodes we have with Lupus also come with other A1 Diseases...including Sjogrens, so members who also have that like myself have a great deal to deal with...it's a wonder we're not totally nuts.
(Excuse my expression...no harm meant)
JUST LOOK AT THIS ABOUT SJOGRENS BESIDES
Behavioral Manifestations
Now, if thinking can be affected, then behavior can be affected. Psychiatric manifestations can occur in Sjögren's and can be overlooked. A doctor who is not thinking about autoimmune disease might miss behavioral alterations, and even with a known diagnosis of Sjögren's, the doctor might dismiss these as being unrelated to the Sjögren's when, in fact, they may be a manifestation of structural disease. Thus, the psychiatric symptoms may be the effect of the Sjögren's on the brain. Sjögren's patients can have depression, and they can have the opposite of depression and feel a little hyper. They can have anxiety, and they can experience panic attacks. It is interesting to note what has not been described psychiatrically in Sjögren's - the very profound psychiatric disturbances in which patients really can't think properly at all- psychosis, schizophrenia and true manic depressive disorders. These psychotic disorders can occur in lupus but have not been described in Sjögren's. People can get depressed because they have autoimmune disease, and they can get anxious because they have autoimmune disease, so separating out whether something is going on neurologically that can trigger the psychiatric manifestations or whether these are manifestations of the disease itself can be tricky, and testing is necessary to do that.
Hey Tez 20. I feel nuts, so, no problem. LOL! I just try to make myself laugh most of the time. I do have sjogrens, too. I was diagnosed many (1990) years ago with it. Didn't get the Lupus Dx until 2005.
Tez_20 said:
Well i was on the sjogrens site lastnight and looking at info besides and it seems that these episodes we have with Lupus also come with other A1 Diseases...including Sjogrens, so members who also have that like myself have a great deal to deal with...it's a wonder we're not totally nuts.
(Excuse my expression...no harm meant)
JUST LOOK AT THIS ABOUT SJOGRENS BESIDES
Behavioral Manifestations
Now, if thinking can be affected, then behavior can be affected. Psychiatric manifestations can occur in Sjögren's and can be overlooked. A doctor who is not thinking about autoimmune disease might miss behavioral alterations, and even with a known diagnosis of Sjögren's, the doctor might dismiss these as being unrelated to the Sjögren's when, in fact, they may be a manifestation of structural disease. Thus, the psychiatric symptoms may be the effect of the Sjögren's on the brain. Sjögren's patients can have depression, and they can have the opposite of depression and feel a little hyper. They can have anxiety, and they can experience panic attacks. It is interesting to note what has not been described psychiatrically in Sjögren's - the very profound psychiatric disturbances in which patients really can't think properly at all- psychosis, schizophrenia and true manic depressive disorders. These psychotic disorders can occur in lupus but have not been described in Sjögren's. People can get depressed because they have autoimmune disease, and they can get anxious because they have autoimmune disease, so separating out whether something is going on neurologically that can trigger the psychiatric manifestations or whether these are manifestations of the disease itself can be tricky, and testing is necessary to do that.
You do make me laugh with your comments...wished i carried your temprement, christ i've always been such a serious person and it's a shame i carry no dimples in my cheeks either. lol
Are you with the sjogrens seperate site as i can't remember sorry (mashed up marbles again) and sorry to hear you got the Lupus after but they reckon if you get an autoimmune disease another follows TIPICLE. :)