I wish my daughter could see this Dr she has been diagnosed with lupus she is 21 yrs old and has had heart attack and in mental hospital's many times. She suffers everyday with body rashes with boils, feels like her head has icy hot on her head and all blood in her head she wants to die tired of suffering and can't find a good Dr 😓
😞Im sorry your daughter is going thru this. I was diagnosed at the age of 19 and now I am 33. My doctors said my Lupus is one of the worst cases they have ever seen. I understand how your daughter feels and I know how bad it can get, but please tell her not to lose faith! Hopefully one day not too far the will find a cure. Best wishes 💕💕
wish there is more awareness of neuropsychiatric Sjogrens as well, preceding onset of sicca by 10 or 20 years. happened to me. tragedy. all those years without treatment almost locked away
@@PsychiatrySimplified especially since they can be completely isolated. I had negative ANA and SSA for decades, started with encephalitis (psychosis, overeating) and POTS, after few decades onset of typical Sjogrens, all my symptoms respond to immunomodulory treatments the same. But a good clinician should have diagnosed easily Initially too because i developed Hashimoto, parotid pain, trigeminal neuralgia and POTS sll at the same time as psychiatric , but psychiatrists never even sesrched physical illness or asked any relevant questions.
@@petvuk there is evidence that neuropsychiatric manifestations may be the initial manifestation of autoimmune diseases. We wrote a paper on this. We cover some of this in this video. Agree that greater vigilance is needed - psychiatrists nowadays are paying more attention to this but agree more needs to be done. A Summary of 3 Important Autoimmune Neuropsychiatric Disorders for Psychiatrists - Dr. Sanil Rege czcams.com/video/4Xr7uswAyyI/video.html
I've had the butterfly rash since I was 14 when I had my 1st flare w shingles & "convulsions" which are now called Grand Mall seizures. Coming out of the convulsions I felt like one leg was the size of a toothpick & the other leg was huge like an elephant's. In NY State, USA it took until I was 50 before I got a diagnosis, all the while with me explaining to doctors how I felt with them simply labeling me a hypochondriac. I've had so many episodes of nearly undescribable weird sensations that it would take more hours than I care to spend for me to list them. I've gone nearly 10 months without being able to feel the sensation of an impending bowel movement. My feet have been numb/tingling for the last 23 years. They sometimes have gotten so painful I could not walk with any sense of normality. One time under stress the pain went all the way up mid hip. I get sensations of bands tightening around different parts of my body. Depression has been with me throughout my life, yet I always blamed my highly dysfunctional family of origin. I've been a "health food nut" ever since leaving my parents toxic home. I feel fortunate that I learned about low dose naltrexone, LDN & was finally able to get a prescription for 5mg. The effect I feel from that is far less pain from a neck & back injury I had 40 years ago as the result of an attack by client at my work. Chiropractic adjustment, Acupuncture & finally osteopathic adjustment we're the only things that helped that before LDN. My prayers 🙏🏼🙏🏼🙏🏼 & good vibes 💫💫💫 go out to all those who are dealing with lupus whether it be as a patient, friend or family member, or medical professional. ☮️💞🙏🏼
I wish my daughter could see this Dr she has been diagnosed with lupus she is 21 yrs old and has had heart attack and in mental hospital's many times. She suffers everyday with body rashes with boils, feels like her head has icy hot on her head and all blood in her head she wants to die tired of suffering and can't find a good Dr 😓
😞Im sorry your daughter is going thru this. I was diagnosed at the age of 19 and now I am 33. My doctors said my Lupus is one of the worst cases they have ever seen. I understand how your daughter feels and I know how bad it can get, but please tell her not to lose faith! Hopefully one day not too far the will find a cure. Best wishes 💕💕
Fascinating.
wish there is more awareness of neuropsychiatric Sjogrens as well, preceding onset of sicca by 10 or 20 years.
happened to me.
tragedy. all those years without treatment almost locked away
Sorry to hear. Yes neuropsychiatric symptoms do tend to be under recognised .
@@PsychiatrySimplified especially since they can be completely isolated. I had negative ANA and SSA for decades, started with encephalitis (psychosis, overeating) and POTS, after few decades onset of typical Sjogrens, all my symptoms respond to immunomodulory treatments the same.
But a good clinician should have diagnosed easily Initially too because i developed Hashimoto, parotid pain, trigeminal neuralgia and POTS sll at the same time as psychiatric , but psychiatrists never even sesrched physical illness or asked any relevant questions.
@@petvuk there is evidence that neuropsychiatric manifestations may be the initial manifestation of autoimmune diseases. We wrote a paper on this. We cover some of this in this video. Agree that greater vigilance is needed - psychiatrists nowadays are paying more attention to this but agree more needs to be done. A Summary of 3 Important Autoimmune Neuropsychiatric Disorders for Psychiatrists - Dr. Sanil Rege
czcams.com/video/4Xr7uswAyyI/video.html
I've had the butterfly rash since I was 14 when I had my 1st flare w shingles & "convulsions" which are now called Grand Mall seizures. Coming out of the convulsions I felt like one leg was the size of a toothpick & the other leg was huge like an elephant's. In NY State, USA it took until I was 50 before I got a diagnosis, all the while with me explaining to doctors how I felt with them simply labeling me a hypochondriac. I've had so many episodes of nearly undescribable weird sensations that it would take more hours than I care to spend for me to list them. I've gone nearly 10 months without being able to feel the sensation of an impending bowel movement. My feet have been numb/tingling for the last 23 years. They sometimes have gotten so painful I could not walk with any sense of normality. One time under stress the pain went all the way up mid hip. I get sensations of bands tightening around different parts of my body. Depression has been with me throughout my life, yet I always blamed my highly dysfunctional family of origin. I've been a "health food nut" ever since leaving my parents toxic home. I feel fortunate that I learned about low dose naltrexone, LDN & was finally able to get a prescription for 5mg. The effect I feel from that is far less pain from a neck & back injury I had 40 years ago as the result of an attack by client at my work. Chiropractic adjustment, Acupuncture & finally osteopathic adjustment we're the only things that helped that before LDN. My prayers 🙏🏼🙏🏼🙏🏼 & good vibes 💫💫💫 go out to all those who are dealing with lupus whether it be as a patient, friend or family member, or medical professional. ☮️💞🙏🏼
Thank you for sharing your personal story.
Does it always manifest as mental illness as a prominent feature?
No not always - but neuropsychiatric manifestations are often overlooked.
@@PsychiatrySimplified thank you…
Forditast szeretnek!