Top 10 Things to Know about Lupus - Part 1

Understanding your (or your loved one's) new diagnosis of Lupus is the first step to learning to thrive with it. This is part 1 of a 2 part series discussing everything newly diagnosed lupus patients need to know.
🔗 Links:
Your Appointment Home Run Handbook - connectedrheumatology.com/app...
The guide you need to be able to tell your doc your story -and find get answers once and for all!
www.lupus.org
www.usinlupus.com
⏱Time Stamps:
2:42 - Lupus is a Systemic Autoimmune Condition
*4:15 What is Inflammation?
6:55 - Lupus is a chronic condition without a cure
7:45 - Everyone with Lupus is different
9:31 - Lupus is characterized by periods of flares & remissions
12:19 - Controlling and preventing flares is the goal of treatment
Want more Connected Rheumatology?
✏️ BLOG : connectedrheumatology.com/blog/
🖥 WEBSITE: www.connectedrheumatology.com
🤝 LinkedIn: Connected Rheumatology, PLLC
🎥 watch more:
Top 10 things to know about lupus pt2 - • Top 10 things to know ...
Common Lupus Symptoms - • Learn about Common Lup...
Race & Lupus: Understand the Connection - • Race & Lupus: Understa...
🩺 Contact us: [e-mail]
Please note - we do not provide medical advice, opinions or diagnosis via email, phone or social media messaging. We are only open to new patients who reside in Texas, USA.
👩🏻‍⚕️ About me:
Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 12 years experience practicing Rheumatology and am passionate about teaching & empowering patients to step up and partner with their doctor. Connected Rheumatology is based in Dallas, Texas and provides state-of-the-art, personalized rheumatology consults for anyone with confirmed or suspected rheumatic, autoimmune or musculoskeletal conditions.
We discuss all things Rheumatology, Immunology, Diet & Movement & Mental Health & Wellness because we believe IT IS ALL CONNECTED!
* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*

[@andrealuviano9531]

Hi Dr Ortiz! I used to be your patient and you took such good care of me for many years :) I wanted to share with you that I am pregnant and will be giving birth very soon! I miss you and I wanted to thank you for your care 😊 God Bless !

[@heidishaunts847]

I have to share my story... it might help someone! When I was 21 after giving birth to my first son, I started having horrible pain in my back, and my joints. I went to a doctor and he prescribed vicodin. My pain continued to the point I was going to emergency rooms ( and one emergency room said you have RA) I just continued to take the pain meds never looking into or taking it seriously. I got addicted to the pain medication. Fast foward to 2014 I got sober and started back up with issues of back pain, and pain in my joints. No doctor would ever take me seriously. Finally in 2018 the pain got so bad I got referrals to see specialist. I was told anything from pain is pain, and I had firbromalgia. They were blowing me off for 2 reasons. One was my drug abuse history, ( even when you are sober it stays with you) and 2 being my young age. I heard that over and over. You are young. I was ready to give up when my husband found UMPC and told me call and make an appointment. I did and my husband drove me 8 hours to see Dr. Gold. Turns out I indeed had lupus all that time. Since he was out of state he gave me a referral to see a local doctor, and enough plaquenil to last 6 months, and also vitamin D. Even after an official dianoses the first specialist I went to told me nothing was wrong with me. When I told her you made a mistake, and I started to cry she threatned me with security. I found a primary care who actually looked into it, found out I was telling the truth, and reffered me to a specialist she knew in the same building. As of today a few years have went by and I am still not completely right. I still go to all my appointments. It could be so much worse right now if I would have just gave up, and I'd be much more sick than I am right now. I am 40 yrs old and my health isn't perfect, but I won't Give up! You know your own body! Trust it, and listen to it! Advocate for yourself! If one doctor won't listen go to another! Keep a journal and take notes! Ask questions! Do plenty of research! Advocate for your health! You have that right! You have the right to say no, ask questions, look for other alternative treatments/ medications, etc! You are the paying customer! It's your money! If doctors arent listening go else where! I know my own body, how I feel, etc! Advocate for yourself and don't back down! Doctors are people just like us and they do get things wrong! It happens! Listen to your body and trust what it's telling you always!

[@anitabarra810]

You are so instructive, and you come across as a very kind, compassionate person. That is a gift you have been blessed with. Your patients are fortunate. Thank you for your videos.

[@megramos2888]

I'm drowning. Please keep posting. I can't afford meds now. XO

[@kathyh6629]

I was diagnosed around 30 yrs old. I had most all of the symptoms. It was bad for about a year and half. As I got better I stopped taking plaquenil. Within 6 months I was sick again. Long story but now I’m 60. I have been in remission for about 15 yrs. I do take my medication. My doctor mentioned hormones and that I might never have another flare. Luckily for me, they can tell by my bloodwor when I’m flaring.

[@rochellecorlett8263]

I’ve been in pain, hurting and feeling like I’ve been run over by a Mac truck for going on 25+ years. I was told I had fibromyalgia but I finally have been diagnosed with Lupus. I’m just trying to understand it.

[@deecee901]

Simalar experience here.

[@SweetiePieTweety]

Please share this comment on all your old ME/CFS Fibro channels…. So many out there need to pursue this possibility. Truly! Knowledge is power. Access to proper care is critical. I was not familiar with lupus at all. That lacking knowledge and depending on medical to properly diagnose is such a risk to lack of care. ❤️ Best to you!

[@DARKhorses73]

I'm in the same boat

[@goddessofpeacelove5341]

Same here

[@jodybogdanovich4333]

Yep. As soon as I got out of bed I could tell if it was going to be another ran-over-by-truck day, depending on how difficult it was for me to go down stairs. 🚛

[@jcd3869]

GREAT point on inflamation and having the pain but no measurable, trackable symptoms. Thanks for having an open mind there. We could not see or measure at the quantum levels of physics but that did not mean it did not exist ;)

[@Writertrm2011]

Thank you for the video.

[@kathleencorrente5917]

Hi, thank you for doing this video!

[@P.T.A.655]

So happy I found your channel.

[@jessicabracho8509]

Thank you for your video. I have been very recently diagnosed with lupus, and had my first rheumatologist appointment yesterday. You’ve helped answer some questions and provide information that I was too overwhelmed to address during my appointment. I hope that with time I will be more calm and able to advocate for myself better. Your channel is definitely an excellent tool with which to build that confidence.

[@ConnectedRheumatology]

So glad to hear that!

[@kowsillaganpat9044]

What tipe of food you should eat

[@kowsillaganpat9044]

What tipe of food you should eat

[@kmd2207]

Thank you for providing this information, very helpful

[@mahrukhakhtar5407]

Very informative and easy to understand thank you

[@vouthaythip1675]

Thank you very much ,very informative and helpful!! Love your videos.

[@lydiamartinez5512]

I love how you explain this, I have sle

[@toletstalkalilmo6330]

I love your videos

[@kathleencorrente5917]

Jessica I will pray for you. I have lupus for yrs there is hope especially having the right doctor.

[@mandypaige9387]

I agree there is a disconnect going on. I'm praying for the doctors to have eyes to see and ears to hear. For my quality of life is just not there. I was a dancer so I know what it's like to be able to move. Now my mobility and strength just are working against me. Pain all the time and oh the fatigue. I wouldn't wish this on anyone. I pray everyone gets there answers.

[@jodybogdanovich4333]

Unrelenting fatigue! I had to give up riding my Harley and can't even manage a short easy hike with my grandkids now, whereas we used to explore caves and go on a lot of adventures. It's a grieving process. I understand. 😢

[@jacobhillanbrand7988]

How did you find out you had lupus everyone? Share your story to help others like myself looking for answers. Thanks

[@odetemartins1103]

Explain to my family Thankyou from the bottom of my heart 💜 God bless you and all your loved one’s 💐💜🇿🇦

[@thulilejama1978]

Very helpful information Dr. Im recently diagnosed with autoimmune diseases where I've developed butterfly skin rash on my face. Just waiting my rheumatology appointment to confirm and start treatment.

[@babybaby5893]

Thank you so much for the educational video from the doctors point of view.

[@tessygreg5003]

Your endless compassion towards humanity Dr.Obaedo has broader my heart, and prove all the doctors here that they were wrong and I really didn't know what else to do than believe in your medicine,thanks so much for curing my... lupus

[@notbroken4342]

I have just found your videos and really appreciate them. I believe I have Lupus that was misdiagnosed as Chronic Fatigue Syndrome 20 years ago. My doctor seems to be investigating it but I know it is going to take awhile and he seems to want really solid evidence before referring me to a rheumatologist.

[@kimlynn50]

I referred myself to a rheumatologist as my insurance doesn’t require a referral. There are basic tests like ANA that are good enough to get you a referral. Your primary Dr is an idiot for prolonging it. The earlier you get it treated the better. I have left primary’s that won’t refer when I want them to.

[@SweetiePieTweety]

To not refer you to a rheumatologist for a condition that can become life-threatening if left untreated is simply negligence sometimes that word negligence and life threatening can motivate get a referral… if you are willing to Point out the elephant in the room. Writing a script to a referral she truly cost this doctor nothing not his reputation nothing and yet it could prevent you from getting the care you need.

[@notbroken4342]

Update: I am now seeing a rheumatologist and test results are pointing at lupus nephritis. No official diagnosis yet.

[@jodybogdanovich4333]

​@@kimlynn50 "Your primary doctir is an idiot." I love your directness!

[@UPDT8243]

Hello doctor! Do you have a video about rheumatic fever?

[@noneyabusiness9441]

I need you!! I have lupus with ITP.

[@DARKhorses73]

My Rheumatologist blew Me off after bloodwrkr. Been to allergist, Rheumatologist, new doctors and I'm still sick with rashes, Hair falling out , headaches, kidney infections, and muscle pain. No one figures it out !!!

[@odetemartins1103]

Doctor I have already lost my colon “complete “ and now my kidneys 🙈I thank you for the videos 🙏💐💐💐I live in South Africa my parents come to South Africa 62 years ago from Portugal 🇵🇹🇿🇦I’ve had it for 20 years not explained I continue to work 🙈🙈and 10 years I lost my colon 🧎‍♀️and also have fibromyalgia 🙏🧎‍♀️you have it easy to

[@meekellassidddiq4608]

Does positive ANA and 0.4 RNP confirm anything. I don't have any aches and pains. Just currently high stress

[@jcd3869]

My girlfriend was diagnosed just a few years ago. She is 30 y/o. She has had her legs fail her. Twice now in the last month and yesterday was the worse as it lasted all day and night. Checking on her this morning. Does lupus often cause issues with walking? Pretty scary. Feel so bad for her.

[@jodybogdanovich4333]

MS, another autoimmune disease, can affect walking. Many people with one autoimmune disease eventually will develop several, unfortunately.

[@jcd3869]

@@jodybogdanovich4333 really?

[@jodybogdanovich4333]

@@jcd3869 Like most autoimmune diseases, it can affect different random areas of the body. A brain MRI can determine if there are lesions from MS. Because of a tremor and balance problems, I had an MRI which showed multiple brain lesions. I also underwent a lumbar puncture procedure because MS can affect the whole central nervous system. Followup scans ruled out MS because they remained unchanged (MS lesions do not remain stable). I was later diagnosed with psoriatic arthritis (PsA) and, per the MS doc (neurologist), apparently at some point the PsA caused inflammation in my brain. My point being, I do know that inability to use legs properly (problems with gait) can be a symptom of MS. Your girlfriend should request a referral to see, or make an appointment directly with, a neurologist for consultation and testing. (just speaking from personal experience) Best wishes to her. She is lucky to have you, BTW. God bless.

[@jcd3869]

@@jodybogdanovich4333 thank you so very much. I wish you the very best for healing and good health. Thoughts and prayers sent.

[@carolscott7156]

I have a very swollen condition in my face & body, especially in the face. Could this be a sign of lupus? The swelling has gone on for 3 years. Blood test show some kind of auto immune. Please advise very discouraged! Carol

[@IamShaunnaNakice]

Very informative. I am just getting diagnose with Auto Immune Dissorder so they me go back to the Labs and took out 4 more vials of blood. So what happens now?

[@ConnectedRheumatology]

Once all the results are in, your doc looks over your results and sees how the results fit in with how you are feeling and what they see on their physical exam. Sometimes this leads to a firm diagnosis, a working diagnosis or more testing/consults. Hang in there!

[@sevimguclu5859]

Can you have an autoimmun diseas without antibodys in your bloodtest? How to figure out ? I have since two years difficult symptoms but nowbody couldt help me

[@cbutler9540]

I started out with RA then Lupus then Sarcoidosis then vasculitis and Raynauds will it ever end ?

[@user-jk5nz7zk3d]

Hi there so I have Hashimotos and hep B. But i break out in hives all over my body at random times it comes and goes and I was wondering what is causing these hives? it’s been going on since 2019 and I still can’t seem to know what is causing it, please help thanks.

[@teresanunnery0406]

Hi, I have just seen a rheumatologist and am still trying to figure out what is happening. I was referred to them by my medical doctor because of an ANA test positive. I was diagnosed with fibromyalgia years ago, but in the last couple of years, my pain and fatigue, hair loss, nausea, and memory are getting crazy to i keep a UTI and now my hearing is bad i just found out. There are just days I dont want to do anything and the Dr. Put me on hydroquiraqine ? another med. I have had a rash but he called it autoimmune disease still waiting. Its driving me crazy any advise.please

[@alliswhat]

Im told I have Cadasil by two nuerologists. Both blood test and skin biopsy were negative!!! Both doctors are agreeing it is. I was told that Lupus, MS, Alzheimers, Cadasil, and two others mimic Cadasil. One nuerologist said its Cadasil Variant. Im not clear on that variant. I have all the symptoms of Lupus, MS etc. Im tired of begging my doctors to give me a definitive answer. I suffered a stroke in 2017. I havent felt right since. I have had some mini strokes too. I also get this red rash on my body. The red spots come and go.

[@mysticalmukta]

I’ve been diagnosed with severe PAH-CTD with high PVR associated with Lupus. Is this a terminal illness?

[@ConnectedRheumatology]

I’m sorry to hear about this. Lupus can certainly be associated with many common and not-so-common complications. We are learning more every day about PAH-CTD with and without lupus and our ability to care for those with it has improved dramatically. Your rheumatologist will undoubtedly work closely with your pulmonologist to get you the care you need. Hang in there!

[@kathleencorrente5917]

Will your bloodwork come back normal if you on plaquenil??

[@ConnectedRheumatology]

There is some controversy around this idea and the answer really lies in the specifics. The length of time someone is on plaquenil and the type of blood work we are talking about makes a difference. Could labs like the dsDNA antibody or the complements normalize, yes. Could the ANA....maybe? This really requires a thorough discussion and head to toe evaluation by the doc to get to the bottom of this question. Not an easy answer, I know, but hope this helps!

[@thechupapisquad4621]

Th3y cant find whats wrong with me .. :( im suspecios of lupus .. but idk om so confused

[@sandrafoster6976]

🙏🏾🙏🏾🙏🏾

[@gemcambell7933]

Good night I am lupus patient my face is dark is it possible to get clear again?

[@myrnatrafford6905]

OMG I am 82 and now about 2 months with yet another "flare up: witch I know now thats what Its called. Wow oh boy I think i am in big trouble! I had my first flare up in 1975 t0 1976 one year of hell was a veggie lots of meds shots waist hes then after i year sent to a rheumatology

[@Writertrm2011]

Is skin discoloration a link to LUPUS When you've been exposed to the sun?

[@itsqueenbeautiess9552]

Right I’m experiencing that too on upper legs

[@BLESS2803]

I've experienced that on my leg but I wasn't exposed to the sun. There's probably a link.

[@771blahblah]

@@BLESS2803 me too, my nose tip

[@yoshi4691]

I have considerably darker (red/purple) skin where it's been exposed to sun.

[@ninabaker6865]

I was told I have Lupus 4years ago, I am 61 years old I'm having a extremely hard time with it all. I need ,would love to join asupport group,Please help!!! I'm white, Female, I stay so depressed. Nina

[@janicedick2449]

Thank you so much I have watched all your videos for lupus I have both types of lupus due to pregnancy at age 37 and hormones in stomach not talking to brain dermatology was first to know it was lupus I was terrible 27 weeks pregnant! I had to have baby and was flailed up but no one new what was wrong biopsy told me I had systematic lupus to ! I feel terrible chronic pain skin is terrible all over hair loss have wigs now but it's the feeling I new I was not write pregnancy and still feel same tried 4 medication and now on infusion next time I get my first monthly one

[@rosetrombley6106]

What If i have most systems, and i get labs often, and Dr. don't give me anything for Lupus?

[@ConnectedRheumatology]

I always recommend asking "If it doesn't look like I have lupus (based on your expertise) what other conditions could be causing my symptoms? What other tests can we do to investigate those possibilities and is there anything that could help my symptoms while we continue to try to find the cause? Hang in there!

[@deecee901]

They called mine fibro..for 10 years it was lupus entire time.

[@deecee901]

Doctor that needs to change. The disconnect. It almost cost me mylife..i had so much pain..hair loss..fatigue..i was blown off for so long. Burning hands/ feet. A flare got them to finally listen.

[@Ariesbuddha]

Can I still have lupus even if I've had clear bloods no raised ANA? The rheumatologist doctor said he can't diagnosis me as lupus even though I have all of the symptoms but no ANA elevation..... how can this be? Xxxxxxxxxxxxx

[@melindavuiller1205]

From my understanding you must be in a “flare” for your ANA to be positive. Without the positive test, they can’t diagnose you with Lupus. That’s why it sometimes takes a long time for diagnosis.

[@thechupapisquad4621]

I have so much inflamation in my body each year i get the same sythoms .. and he cannot diagnose me .. s9 id just wish i knew

[@siamsadie]

Is there a natural remedy for the symptoms?

[@AngelRoseAngel1980]

Magnesium

[@girl38rockify]

Boswelia helps w inflamation a strict antinflamattory diet n exercise

[@dustibradford2075]

Hello so they think I have lupus both grandparents on both sides have it . I have hashimotos and celiac and Anemia along with many more and I had positive ANAs before when diagnosing my other disorders but now they are looking for lupus it’s saying negative but my doctor is positive I have it too he said it might be because I’m not having a flare right now .. I’ve also had pneumonia for 9 months and severe asthma so I’m on a shot called fasenera for e asthma and he said that shot can be messing with my test results?!

[@ConnectedRheumatology]

I replied under "Why you can't get a diagnosis"

[@AngelRoseAngel1980]

Magnesium

[@shinkhaleynjiley4261]

Why don't you talk about any of the Meds Rheumatologists prescribe?!

[@Shelsight]

She does in other videos. Look at her channel. This is just one of a few videos if you are a complete beginner in understanding what Lupus is. She has multiple videos re meds.

[@sheilasizemore289]

At this point in my life,my quality of life is 0😢

[@ninjakris3004]

Anyone have suggestions or tips for someone, me who has a new GF with lupus? Thank you, appreciate it!

[@lucypilgrim7764]

Please unsubscribe

[@michelephillips4197]

Go to the subscribe button and click on it again. Where it says subscribed then it will say subscribe instead.

[@anitakirby2964]

Tell us the smptoms already. You're basically babbling along

[@charlestonscnative9083]

This was "10 things to know", not "10 symptoms". Since lupus can affect every single organ or body system she would be speaking for hours. My rheumatologist says I have 4 body systems involved that we know of so far and each person's presentation can be different.

[@wendydunham5053]

YWith all respect, you may want to look up the definition of babbling, because this awesome rheumatologist who shares incredible content for everyone's benefit is certainly not babbling.