Lupus LA works hard to raise awareness and money for lupus. Lupus affects 1.5 million Americans, and over 60,000 in Los Angeles County. Through fundraising events, patient conferences, and support groups, Lupus LA is making a big impact in Southern California. Learn more about what we do and who we are by checking out our videos! Find out how to support us at www.lupusla.org.
Hi there! I’m late on finding it but the FATIGUE that comes w this DZ is overwhelming and I am now on year 20 of diagnosis. My question is the ability to qualify for CAR T CELL THERAPY without kidney dz yet bc would it not be sensible to help a patient that is suffering 20 yrs BEFORE it goes into the severest of dz? My diagnosis perfectly lines up with your ideal candidate of Lupus; Scleroderma; Polymyositis; RAYNAUD’s active syndrome. Please direct me where to go at Mayo or whom to speak to. I am not far in North Dakota, myself. Thank you! Angelina ATF
Hello to each everyone’s of you I have a very important message or concern regarding the lupus which I had my first rheumatologist doctor told me that I have a sign of lupus. Besides of thyroid, migraines, hot flashes, vertigo, anxiety, depression. Literarily it’s been bothering me since I can remember. I don’t know where to start but I know that I have been going through this pain for a long time. I was working hard when I kept going back and forth to see my doctor and I limit myself to say how much pain I have been having because I was afraid to take medications and I was afraid that I get fired from my job because of too many doctors appointments. Sadly the pandemic helped me to decided to take the severance package from my employer which I was still taking care of my mom health and her health was not good either so I decided to take the severance offer it was offered to people that wanted or had a difficult time or reason important than anything else. I thought I was just over work and stressed worried about my mom health. So to make the story short all my doctors and therapy’s appointments isn’t going well because of copay. I have not been able to go back to work since 2020 after 20 1/2 years and yes twenty and half years of work I can’t even get any help from the government to get my health care paid my bills. So sad and I have a lawyer that hopes to help my situation cannot wait to get back to normal body and not worry about bills filled up. As of today still hoping to get help from the government still praying hoping. To all of you who is going through any kind of pain hopefully healing and help is on the way to all of us god bless 🙏🏼🙏🏼🙏🏼🙏🏼
I'm currently waiting for tests to come back for my chronic uveitis with my optic nerve changing. Lots of stuff like diverticulitis that perforated and bells palsy in the past. I am very sensitive to the sun But I am also white and red haired. A lot of my symptoms line up with lupus and my doctor is leaning towards that right now. But yea it was weird to me because I thought that was a women's only dieses Guess Im learning new stuff. Anyways thanks for the info Its hard to find anything related to men and lupus. Also had to have my appendix taken out as a child because it was full of pinworms. probably not related but wired none the less. Also had surgery on my feet at 14 my Achilles tendon was to short they had to lengthen it. and my feet had to have bones broke and shaved down and my heels have metal bullet shaped gear in them now to keep my feet straight. I was in a wheel chair over that one for about a year and a half. I have also had the issue where When i breathe in deep it hurts. Had it happen today while I was working.
Thank you for this. My GP literally asked me what tests he should do to determine if I have lupus. I have a whole host of symptoms, but the blames all of them on my Hashimoto’s. I’m going to show this to him.
I really had a blast doing this interview and I really appreciate Lupus LA providing a great platform for us to be able to share my story and be able to let the world know about lupus and especially from a mans point of view. As I always say I'M DRUMMING TO A DIFFERENT BEAT AND THAT'S TO BEAT LUPUS. #BEATLUPUS
My joints and muscle hurt wo bad to could it be the heat,thankyou 8m tring these excercises,I to the point where anyth8ng hurts after I had a 20min seizure,thankyou for this video
I was diagnosed with SLE while in my late 40's after complaining of joint/hip pain. I am currently in my early 70's (and a white male, go figure). My PCP referred me to a rheumatologist who, after running more tests, confirmed for a fact that I had Lupus. I was handed an information pamphlet and sent home with no follow-up. I think that the only parting advice from the doctor was "Stay out of the sun." Looking back, I must have had SLE for years due to chronic anemia. I also had been diagnosed with Wolf-Parkinson-White Syndrome where the anemia exacerbated my SVT episodes. Without proper care from a qualified specialist, things went from bad to worse over the next year. Over a 6-month period, I had 2 myocardial infarctions and 3 DVT episodes. After the second DVT, I had surgery to implant a greenfield filter. After the myocardial infarctions, surgeons performed an angiogram but found no heart damage or obstructions. Every time I had a DVT event, I had to go on disability for up to 6 months and stay off my feet and be on strong pain medications and anti-coagulants. I had also lost over 30 pounds over time. I was fortunate enough to have a conversation with one of my wife's co-workers who had Lupus. She had been fighting the disease for many years. She was under the care of Dr Daniel Wallace and strongly encouraged me to get a referral and an appointment to see him. Dr Wallace did more for good for me in one month than my other doctors did in years. I honestly feel that he saved my life. I recently had my fourth clean PET scan in the last 15 months after a 5-month chemotherapy regiment for treating my stage 4 non-Hodgkins lymphoma. It would be great to meet Dion some time just to swap stories. I am also a former drummer.
Why is my alkaline phosphatase elevated. Most recentmy 990. DX 2005 connective tissue diwe are from elevated liver studies, positive ANA then +ANA panel.
Disappointed to see this multi-level marketing company on the Lupus LA channel. Lots of misleading info and unsubstantiated claims offered in this video. 😡
I also don't like the taste of turmeric. I add turmeric to food with other spices and strong flavors that hide the turmeric taste. Examples include lentil soup (eg Turkish or Indian dal), a little in salad dressing with kalamatta olives, and of course foods with Indian or Trinidad spices (eg chana/chole masala, Trinidad channa).
I’ve tested negative for all the ANA except anti-histone drug induced lupus any thoughts or recommendations great video very informative. Going to start trying NAC. I’ve had some improvements with methylene blue Bpc 157 oral along with NAD plus IV infusions and also infrared sauna.
I'm not sure why environmental toxins are treated as woo woo in today's culture. There are so many incredibly un-natural chemicals that we are exposed to in this current man made world that we are just not able to process. I mean animals in the wild living in pristine rainforest environments are dying from toxin related exposures.
ANTI DEPRESSANTS? Are you serious? Please educate yourself about the fake mechanisms of SSRIs. Hard pass. Drug pusher. Why are you not advising K2 with D3? Prednisone won’t “cause” Osteo, lack of K2 causes osteo. Sleep study? Omg. You’re not a wellness advocate, you’re a capitalist. CPAP? You’re not even investigating gut biome which causes apnea. STUMBLED UPON INTERMITTENT FASTING???? OHMYEffingGOD. You are just a compilation of topic sentences and headlines. YOU ARE DANGEROUS. The epitome of an AMA doctor who only has partial knowledge. Enjoy your expensive house and cars, while your patients scrape up finds to pay you for 20-30 years.
This would be a solid video if not for the obvious, grotesque pleasure this guy gets out of humbling a patient he has quite a bit of power over - repeatedly stressing in the video how humbling her turned her from a frowny black woman to a happy smiley black woman and gloating over how she was forced to beg to come back to his practice. Rheumatologists are thin on the ground. Really goes to show how doctors can get away with absolutely repulsive attitudes toward patients.
One of the best videos I have watch ever explaining causes and connections in SLE ! And I watch and read a lot since I want to put my Lupus in remition. Thank you ! Gracias !!! ❤
The biggest problem for me is suffering so long and consistently have positive ANA for both Lupus and Sjorgrens is the lack of input from the doctors!! They just don't seem to want to help you unless your numbers are really high! I'm absolutely frustrated with the attitude where I live! They just ignore you
Positive ANA is not specific for SLE and Sjorgrens. Usually positive of 1:640 is lowest level to be taken seriously, maybe 1:320 titre. The diagnosis is a legal statement, it must follow those criteria.
Hello I'm a 65-year-old male been in chronic pain for a very long time, many years. From joint pain to neck back shoulders chest and more. Because I told them I was in chronic pain they label me a drug seeker . I could get no help from anybody for years and have suffered greatly. Last week I went to the hospital twice. The first time for breathing and chest pain. That's when they found out I basically need a heart transplant have everything you're talking about with my heart the second visit to the hospital same week had a stroke. My primary doctor sent me for Lupus test on the 8th yesterday. I've had an autoimmune disease for a while they just didn't know what it was for years. I'm just wondering if there's any hope for me at all now that im sure blood tests will come back Lupus all these years
When I exercise; it makes my face turn tomato red, it also exhausts me, and I end up being down for two days after I am down. Should I suggest Antifrolumob? I do take high dose EPA 1200mg - In form of Omega 3 form fish oil it also has higher dose of DHA 900 mg. 4080 mg fish oil. I do try to walk three times a day. Not much over 2 miles a day. But it’s what I can tolerate.
