Top 10 things you need to know about Lupus

[@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!

[@KidCity1985]

It's an ongoing battle. I wish you the best

[@fionaestherfortuin4185]

Sorry about your journey .I found a old dr that told me I have fybro but I went for a bone density test and that dr was a R A dr she told me I have systemic Lupus put me on metatraxit which I took on a Sature day an plaquinal took metatraxit for a year fast forward my son had a customer who does cbd products an put me on cbd drops an capsules...I'm now only on drops maybe twice a week I have to take Magnesium glycinate ,,, omega 3 Bromelian quercetin nerobion Ecoxar I'm in remission at the moment I'm gluten free I do carnivore one week an ketovorse one week I do pilatis....oh yes I'm on one prednisone an a allergy tab I get shingles often an face rashes I also have fybro itch but I make sure to move I am 72 now just had full blood counts only Ana slightly up I have periferal neuropathy si I'm on lyrica will be going on gabibenton I drive u cook I sew mwaw

[@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.

[@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.

[@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

[@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 ;)

[@kathleencorrente5917]

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

[@lauramurchison8126]

Just diagnosed with Lupus this week after 2 months of major inflammation that started with the flair up of Osteoarthritis in my knees. As it will be a while before I can get to see a Rheumatologist your videos have been very helpful! Thank you for being with me on my journey!!

[@srijoni1237]

How did you get to know you have lupus ? I am 54 I also had a flare of osteoarthritis in my knees did anti ds dna from a lab the result came 52 but the cutoff threshold for that lab was 100 so it said negative . I don’t know what’s up . How are you and what were your symptoms?

[@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

[@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. 🚛

[@megramos2888]

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

[@odetemartins1103]

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

[@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!

[@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.

[@lydiamartinez5512]

I love how you explain this, I have sle

[@vouthaythip1675]

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

[@kmd2207]

Thank you for providing this information, very helpful

[@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 !!!

[@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

[@TheBeccafbaby]

I’ve been fighting to get a diagnosis I have protein in my urine high levels in my pancreas I feel fatigue all the time, brain fog, migraines, joint pain, swollen joints, inflammation, chest pain and hives on my body. My doctor tested me Ana came back 1:40 positive she tells me everything is negative and now referring me to a GI doctor. I’m so tired of feeling this way.

[@ConnectedRheumatology]

I’m so sorry to hear this and hope you get answers soon!

[@amyalbernaz8687]

How do you know if proteins are in your urine?

[@P.T.A.655]

So happy I found your channel.

[@mahrukhakhtar5407]

Very informative and easy to understand thank you

[@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

[@PrettyEyesz]

I have almost every Lupus symptom except for the butterfly rash, photosensativity, and Raynards syndrome. I was diagnosed with Sjogren's a year ago, but I think there is a high chance I have both Sjogren's and Lupus together.

[@babybaby5893]

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

[@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.

[@noneyabusiness9441]

I need you!! I have lupus with ITP.

[@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

[@kathleencorrente5917]

Hi, thank you for doing this video!

[@Writertrm2011]

Thank you for the video.

[@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!

[@amyalbernaz8687]

I’m 43 my hair falls out in clumps I stopped taking showers nightly because the emotional and mental trauma from just trying to wash my hair in my shower is so overwhelming because I wash it and the amount of hair coming out my head can not be normal I go to put it up to wash underneath and there is like NO HAOR to even pull up anymore it’s just very very uncomfortable and overwhelming starting to think it’s some auto immune disorder

[@UPDT8243]

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

[@meekellassidddiq4608]

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

[@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.

[@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

[@khumjardebbarma7289]

Im 24yr old and getting lupus

[@toletstalkalilmo6330]

I love your videos

[@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.

[@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

[@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

[@cbutler9540]

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

[@siamsadie]

Is there a natural remedy for the symptoms?

[@AngelRoseAngel1980]

Magnesium

[@girl38rockify]

Boswelia helps w inflamation a strict antinflamattory diet n exercise

[@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

[@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.

[@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

[@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

[@srijoni1237]

What were your symptoms?

[@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!

[@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"

[@gemcambell7933]

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

[@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.

[@ninjakris3004]

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

[@AngelRoseAngel1980]

Magnesium

[@sheilasizemore289]

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

[@sandrafoster6976]

🙏🏾🙏🏾🙏🏾

[@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.

[@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.