I want to make a disclaimer that you should always seek advise from a doctor or specialist before self-diagnosing. If you are experiencing any of these symptoms please make an appointment with your doctor. I also forgot to mention that rheumatologists will typically see if you have four or more before diagnosing lupus. How many of the 11 criteria did you have when you were diagnosed with lupus?
It took me just over 2 months to get a diagnosis. My sle hit me very hard though and I almost died. I had all the criteria except for neurological involvment so that actually saved my life as it left no doubt that it's lupus. My kidneys lungs and heart were failing and I was extremely anemic with very high potassium levels. I am so grateful to my doctors for saving my life
Thank you for posting. It took 3 long years and 3 rheumatologists to diagnose me last month. It's been a journey but I do believe like you, never give up. You know you best. ❤️
I just went to the rheumatologist 3 days ago and they assured me they didn’t suspect anything but they ordered a ton of blood tests “just to cover our bases.” The reason I was there is because I started experiencing Raynaud’s Phenomenon on November 29th. At my Primary care doctor appointment, she assured me she didn’t suspect anything was wrong but she ordered the tests….”just to cover our bases.” My ANA came back positive. Meanwhile, every test the Rheumatologist ordered so far has come back positive. I am so frustrated because nobody has even talked to me about Lupus! So I’m just worrying about this on my own until a doctor views my results.
I’ve been diagnosed for 11 years now, it took over a year to get formally diagnosed. It’s super stressful going through the process. I literally went through 6 different diagnoses to get to my lupus one and they only tested my ANAs when I suggested it to my doctor. Which is ridiculous considering I have 10/11 symptoms! Stick in there those trying to get diagnosed! I love your videos, it’s nice having someone of a similar age group to mine who has lupus. You’re a great advocate and I wish your videos were around 10 years ago.
Thank you! I actually started this channel and 2010 and posted my first lupus related video in 2009 (so almost 10 years). That is crazy that they wouldn't test your ANA. This is why it's so important to share our stories.
Out of the eleven ten came out positive for me and tomorrow is officially one year since my diagnosis. By the time I went to see a rheumatologist my symptoms were so bad, my feet were very swollen, I had joint pains, fatigue and trouble breathing I was rushed to the hospital for treatment and things only got worst, I had to get an emergency surgery because of and obstruction in my small intestine, after the surgery my mom said I spent four days in a dazed state of mind because they kept giving me morphine (I have no memory of that, she even said my family and people from my university went to visit me), I spent two month between two different hospitals hardly being able to physically get up from the bed by myself, I had to receive dialysis for two weeks until I was finally discharged and able to go home. I had to basically relearn how to walk. I never in my life expected any of this to happen to me because as a young child I was always healthy and in my family there is no history of anybody with lupus who is closely related to me
I didn't get diagnosed until almost 2 years after I started having symptoms. It's been 8 years now and I still feel like I don't really understand this disease but your videos really help! Thanks for sharing :)
Hi. I'm currently in the same situation. How did this turn out for you? What are your symptoms? I have joint swelling, muscle pain and photo sensitivity with what I consider blisters that sometimes scar!
I have been dealing with symptoms for the last 3-4 yrs!! Just recently I finally had a posture ANA test and the low platelet count with blood showing up in my urine when looked at under a microscope, it’s taken me years of going to a gastro specialist over my bowels, a neurologist over my nerve issues and so on so for me it’s take many years for me to get diagnosed with lupus and now just when I was told 100% I have lupus tests show that it’s already has caused some mild kidney damage. Thank you so much for your videos. You are a blessing to so many of us. Sending love from Kentucky 💙
I went to my doctor for these scabs/ulcers on my fingertips from the Raynauds and at first they told me I had scleroderma and I had to wait a month before I got to see a rheumatologist who finally told me it was lupus.
So I've watched your videos for years and we've talked a few times, originally before I was diagnosed with Ehlers Danlos Syndrome, I swore it was lupus. A lot of the symptoms are the same but what no doctor has been able to explain to me is how I still have the Malar Rash and Pleurisy. Hell, I've even had problems with psychosis and low/high blood counts. Its really weird because I'm confident I have EDS and Fibro and bunch of other comorbidity conditions but hearing you talk about the criteria just makes wonder about the things my doctors have ignored, including my rheumatologist who originally diagnosed me.
Chronic pain is real. Search until you find a doctor who will listen to you believe you and discuss with you. I have found 3 in my years with Lupus. For some reason they have all been in Madison County, Montana even though I have seen Drs in 3 cities in Michigan, multiple hospitals in Las Vegas, several other states.
My rheumatologist just diagnosed me with lupus with a negative Ana. I have eight out of the 11 symptoms that you have listed. My blood work comes back extremely funky.I have low T cells and low B cells. My rheumatologist after seeing that. it wasn't even on the blood work he did. Polyarthritis is not associated with Osteo or rheumatoid and is not damaging to the Joint. It has taken 12 years of being told that I'm just fat lazy, out of shape. before I came to meet this wonderful rheumatologist who has reassured me that I am not crazy. that all of my symptoms are connected. My list includes Raised rash on my scalp Malar rash on my face Fever Joint pain swelling and stiffness Sun sensitivity Cold sensitivity( Raynaud's disease) Hair loss Fatigue Mouth sores Anemia vitamin D deficiency Concentration and depression Headaches Chest pain And swelling in my lungs which is causing shortness of breath
Glad you finally have an answer and can move toward healing! The rheumatologist I saw told me I was too fat when I explained that I am in such extreme pain and so fatigued that it was difficult for me to keep up my regular exercise regimen. LOL thanks!
I still don't know what's going on with me. I am currently 21 weeks pregnant and feeling better than I have for a long time prior to pregnancy! I received a positive ANA test a little over a year ago, after thinking I had Lyme. I saw a Lyme specialist who told me I tested positive on the western blot due to an auto immune disease. I have pain in my feet, hands, knees and neck, fatigue, butterfly rash and POTS. Lyme specialist said no Lyme, sent me to a rheumatologist who told me that I don't meet criteria for SLE but have a high ANA and EOS and essentially told me to come back for more blood work when my symptoms worsen. It felt discouraging. I am totally loving pregnancy and how great I feel!
I had pretty bad discoid rash... On my face, ear, nose, and on my head (which made me lose a big part of my hair, I had to get corticosteroids injections on the top of my head to "save" the skin so my hair could grow back to normal one day). This video is so important in so many ways! I spent 6 months experiencing the butterfly rash, discoid rash, joint pain, photosensitivity... But I waited to long to look for help. Thank you for spreading awareness 💜
It took me 3-4 years for an official diagnosis. And 8 months before even going to the doctors because my mom didn’t believe me. My doctor said often with borderline results treatment is one of the ways they diagnose. I got better after treatment and finally got positive blood tests 6 years ago.
Thanks for the info. I've had two positive ANA tests. My doctor says he isn't too worried because they're on the lower side. I think Lupus is a good fit for my symptoms, though. Major photosensitivity, joint pain, extreme fatigue and migraines that generally result in hospital visits.
Yeah I don’t have 11 and I have lupus. I didn’t get here easily but not everyone fits in a box in rheumatology. It took 6 months. I had pitting edema, swollen abdomen, enlarged lymph nodes in the mesenteric tract, daily fevers, positive and highly elevated CRP, positive and highly elevated Double Stranded DNA and slightly elevated Single stranded. Pain holy shit pain. I had symptoms for a few years before but I had no idea what was going on. But October 2018 I woke up with pitting edema thought it was cardiac or venous and it wasn’t, quickly ruled out cancer and then Developed a Parotid infection. Which sucked. I do not wish this on my worse enemy. Also at diagnosis time my urine was spilling g so much protein and my liver enzymes were not good. I didn’t have skin involvement or hair loss. I was no hungry at all. I have been on prednisone 20 mg daily for 4 months and I started plaquinil and developed a drug eruption rash. So now I’m going on cellcept. I need to get of prednisone. Every time I wean I get sicker then a dog. I wish anyone going through this luck and just keep talking to your doctor. No one presents with lupus the same way. No one.
It took me 3months luckily to get diagnosed coz all the signs I don't have just Neurologic probs I'm 25 and I've had two brain strokes yeay me to hell with this Lupus I love channels like this in learning a lot its been a year n 8months since diagnosis n for the first time i haven't been admitted for 8months yeay me
I have a positive ana , joint Pain daily, especially in my back and occasionally my fingers, always in my feet & knees, I cannot tolerate the sun, I occasionally get a discoid rash on my back I'm always drained & feel like I've been hit by a bus most days,I have had the shingles 3 Times in the Last 5 year's, I saw a rheumatologist he diagnosed me with fibromyalgia and stress...my ana wasn't high enough to be autoimmune according to him, my ana was 1.40 in 2015 then retested by another doctor in 2017 and it was 1.80 ..my doctor suggested possibly mixed connective muscle disease or lupus but when I saw the rheumatologist he said fibromyalgia 🤔 also just want to add I had severe preeclampsia with my pregnancy and that's when all my health problems started, I then went onto having an ectopic pregnancy a couple of years later ,and I've not been healthy ever since that was 10 year's ago 😔
I was suspected to have lupus but dont have a positive ana. So I was told theres not much they can do to help me as a result. However I am advocate of going back to see my gp if something happens to get some sort of help but also so it can be documented on my notes for future use when needed. Though one time my vitamin D was low and the wether was really sunny. So I thought spending time in it would do me the world of good ironically it just made me worse off as my joints stiffened up.
Check into other autoimmune disorders and even connective tissue disorders. I spent years thinking i had lupus because my symptoms matched but I had a negative ana, I was finally disgnosed with Ehlers danlos syndrome which is connective tissue disorder. Its crazy how simpliar the symptoms are to lupus. Dont give up and never stop advocating for yourself. You know your body best.
@@Willowing_Weaver I've had EDS as a suggested look into before by someone else but im not sure if you'd be able to find a stiffer hip/knee joints than mine. The last time i climbed over fence I had to move my hip with my hands like i was some sort of robot. Though I need to look more into other connective tissue disorders as I've only done a brief look.
@@seanto6363 definitely look into other conditions, I know I have super stiff and achy joints. Its only been the last year that ive been dislocating my joints. And certain joints get so swollen that I can't even move them like my knee. I know a big thing for me is constant pain.
lizzy holbrook when you feel that you have a really bad flare get tested again. I had negative ANA at the begging and kept fighting until came up finally
I've got negative ANA and the others are negative. TPO Antibodies (Hashimotos Thyroiditis) was positive (off the charts high). I have every marker for Lupus from the malar rash, to the nose and mouth ulcers, joint swelling, sores all over the scalp, kidney stones and swelling, severe anemia (tho platelets and white blood cells are always high), pleurisy, sun sensitivity (increases flare symptoms within 10 minutes of sunlight). My C-Reactive Protein is high and always getting higher, my ESR is high and gets higher, TPO is higher still. Looking over my tests, the one test I haven't done is the antiphospholipid test. My rheumatologist has seen my photos and looked over my tests and says that I have inflammatory arthritis with unclear focus on what disease it is. She tells me she doesn't know what is causing malar rash and ulcers and kidney swelling. There is no damage in joints but they get inflamed. I should find a new doc. Newest tests show there is an immune deficiency. The latest research shows that the ANA test may be overturned soon cause it's not as accurate as they once thought.
Just wonderful, I been tryin to find out about "systemic lupus treatments" for a while now, and I think this has helped. Have you ever come across - Denmelia Jansabella Builder - (do a search on google )? It is an awesome one of a kind product for discovering how to treat lupus without the hard work. Ive heard some pretty good things about it and my mate got cool success with it.
Thank you, I just appreciate you saying that you understand and believe. I am 3 months with this flare up. I can't wait get in to see a rheumatologist even with a referral, +Ana's, homogeneous 1.160 + in September and same in December along with the fact I have days I can't walk, I I can't drive. I I use a cane which I can barely hold myself up with because of weekness. The Nurse Practioner keeps sending the referral without something, but first no labs, and DX of Malise, she didn't mention that I have Graves disease And my Thyroid was radiated and 30 years ago. The wait to get in is now in September 2020. I can't go on like this. I I can't work anymore so financially I'm done. I feel like Noone listens, I'm on Medicaid now If I had private insurance I would be in. I I even have labs from the Mayo Clinic. Any advice? I spend day after day calling doctors, and I I don't have much I. I have have had this flare up for over 3 months now, my vision is going. I am changing my NP (Dr) Monday I cant keep seeing her. Do u have any advise. I'm losing hope.
I've had "positive" and "negative" tests since 2013. It's so frustrating because I can't be treated since it's so inconsistent. The doctors just tell me to "take it easy." Did you have any experience with that? My ANA comes back different every time.
Can you please tell me: Do the lab tests (especially blood counts) show up (Lupus related)when you are in between flares? Thank you so much. Videos are a great resource!
So she’s not asking about centrinomes. In fact centrinomes are not required for diagnosis for lupus actually. Antibody type is. Some people never pop a centrinome type. One thing to keep in mind is there are variances within each lab regarding ANA as well. So what I’m getting from this is she had a positive ANA but not a specific type of antibody needed for diagnosis of lupus. For example I’m smith and DS DNA positive and that’s all she wrote. Centrinomes can help when the ANA sub type is equivocal and again that’s a lab issue.
I was told I have Fibromyalgia which I don't doubt but I also have Lupus specific symptoms including butterfly rash and low grade fevers. In the past my ana was negative but I think I might ask to be tested again.
I have the malar rash, I get the discoid rash when I’m in the sun, mouth ulcers on the roof of my mouth, arthritis is hard, I use a ton of lidocaine cream , serositis, neurologically I have a problem with memory, anemia and my ANA+ abnormally high a abnormal homogenous pattern. My dx is undifferentiated connective tissue disease so far not lupus.
Homogeneous pattern is often Lupus or RA from what I have researched. I understand there is an ANA test they have used forever and now a newer one that some scientists are fond of. Makes me wonder which labs are using which tests....the old one or the new one and how many mistakes are out there...I've read sometimes a report will say we have one type of pattern when in fact it was a bit mixed. Hard to say. Makes me wonder if sometimes many of the similar type of autoimmune disorders are more related than they think or even overlaps. Often treatment can be the same...all depends. I wish you the best.
It took me a year & a half & i tested positive for anti nuclear antibodies ,amongst uveitis in,my left eye that led to my retina riping & ventra detaching in 2010 & 2011 had to have surgary i have sun intollarance ,i have to keep my whole body covered even in the winter in summer alwys wearing long sleeves & hats year round,i get shingles all the time & mouth uclers Pyricrodidis sorry bout that spelling anyways to many inflamtory things to even list i beleive ive had it most all my life ..oh yea plus hives
I get discoid "rashes" on my scalp and face. I usually get the butterfly style discoid rash, but sometimes it can go down to both sides of my mouth and up the bridge of my nose into my eyebrows. If it gets into my eyebrows it will usually go up my forehead as well and into my scalp and behind my ears. It sucks because the hair at my hairline, and some of the hair on my scalp, will fall out when this happens. I lose handfuls of hair, no exageration! When it does clear up (tmi) all of the skin flakes off. So hard to keep my hair and scalp clean and moisturized. If I don't wash it several times per week it's disgusting, but if I do its super dry and it flakes even more :-( .This type of rash is very painful, in my opinion. To the point where I can barely move my face without some part of the skin on my face or scalp cracking and bleeding (think dry lips). Attempting to cover it up with makeup is not an option for me. It would just burn and make it worse. I purposefully got oversized prescription glasses in attempts to cover it slightly when I am out in public. Depending on the size of the "rash" it does make it less noticable, but they can irritate the area at my nose where they rest. It sucks, but at least I don't get as many stares. I use hydrocortisone on my face (and sometimes my scalp) to control it, but I was warned not to use it to often because my skin was lightening. Hopefully the hydroxychloroquine will rid it for good!
My daughter has been diagnosed with sjogrens and then additionally fibromyalgia since she had migratory pain. She recently had an endometrial cyst removed from her ovary along with other endometriosis in her abdominal cavity. She has a severe case of endometriosis so we’re now wondering how much of her pain has been caused by that. We’re not positive she has fibro at this point.
A year ago my ANA was high but then last week they detected none. I have been suspecting I have lupus, but Ive been waiting a year just to see a rheumatologist. But now my ANA is negative, I'm not sure.
Why did it take a year to see the rheumatologist? What country do you live in? I hope you’re feeling better and get the correct answers to your symptoms. I know how difficult that can be.
Andrea Aldrich my ANA test was negative the first two times I took it then the third time it was positive I also have an autoimmune liver but do not have hepatitis I think lupus is attacking my liver I also have low pulse pressure which is indication of heart failure I get chest pain often I also have low blood pressure cold hands and feet I keep my house at 78 degrees still cold sometimes sore muscles sensitive to the touch always tired I also have the red cheeks hope that helps thanks
It took me five and half years to FINALLY 😭 get diagnosed! Last March so almost a year now.... It's been a rough year, I have systemic lupus and I have almost all 11 makers... No kidney or liver issues right now! Mine has been joint pain in my hands, hips and knees, lungs ( bronchitis, chest colds and sinus issues) also dry mouth & eyes! I just did 8 weeks on Plaquenil and thought it was lowering my immune system has anybody else had this issue? I'm off of it right to see if I can recover because I did 24 days of antibiotics and 7 days of steroids, I was sick constantly! So far I'm not having major reactions to the sun but was informed that I have to use sunscreen and be careful!
My dermatologist suggested that my lesions are discoid lupus. I have a sore above my eyebrow and below my lip and my while scalp is covered in boils cause from me picking at it.. I wouldn’t t wish this pain upon anyone as well as the fatigue and lifeless feeling that I wake up with.. the sores are horrible they sting, when I go in the sun or if I sweat the feeling of it is almost like someone is lighting me on fire. Not pleasant at all 😣
7 years to get diagnosed and still to this day if I got to a new rheumy they will start telling me that I don't have lupus !!!! I AM SICK SOMETIMES VERY SICK
I had ANA at 320, and in constant flare with painful feet, joints, and terrible rashes - sun related, not malar. Dr still seems to think border line. Of the 11 criteria I have 4 but flare feels constant now 99% of the time for last 2 years. Suddenly started in end part of pregnancy/giving birth Trying to figure out what I can do to minimize flares. Also stay in South Africa so temperatures of 37 degrees most of the year not helping!!! 🙈
I was borderline positive for ana & ds-dna, but a few months after that the results were negative. So I'm not diagnosed yet.. But I'm also HLA-B27 positive which could mean I have some sort of spondyloarthritis. It's so hard to tell if there are no obvious signs!
HLA -B27 is actually positive in 30 percent of the population. All that means is that people with AS, ulcerative colitis, and other conditions are found to have that antibody. It’s not a diagnostic tool in itself.
Do you have to have all 11? It was suspected I had lupus but it was decided it’s RA but I’m not so sure. I get the malar rash (although it isn’t raised on me at all....just extreme redness across my nose and cheeks), I have severe anemia, arthritis, and possibly a couple other of those. My rheumatologist told me RA and lupus are very similar though but he also said many of the treatments are the same for both diseases so it was almost like either way it didn’t matter.
For lupus you would have to have at least 4 of the criteria. They are similar, but RA is more damaging on the joints. I had a friend with RA and our treatment routes were slightly different.
Live Hope Lupus thanks for responding! I think I need to have the rheumatologist explain more why he says ra and not lupus. I’m also considering asking for bone scans which would show joint damage more.
Thank you for this video! I am going through diagnosis now as I think taking Humira for 10 years has caused me to have lupus. But I work out every day and it's the only reason why proper filtration happens in my system. My kidneys started taking a nose dive as well as a gradual decline of red and white blood cell counts. My doctors think I'm making things up. This is an awful demeaning process and I still dont know what's wrong. Also, my discoid rashes start at my ankles. Anyone
I want to make a disclaimer that you should always seek advise from a doctor or specialist before self-diagnosing. If you are experiencing any of these symptoms please make an appointment with your doctor. I also forgot to mention that rheumatologists will typically see if you have four or more before diagnosing lupus. How many of the 11 criteria did you have when you were diagnosed with lupus?
It is hard to go through autoimmune problems. Thank you for making this video ❤ Sending well wishes xo
It took me just over 2 months to get a diagnosis. My sle hit me very hard though and I almost died. I had all the criteria except for neurological involvment so that actually saved my life as it left no doubt that it's lupus. My kidneys lungs and heart were failing and I was extremely anemic with very high potassium levels. I am so grateful to my doctors for saving my life
Thank you for posting. It took 3 long years and 3 rheumatologists to diagnose me last month. It's been a journey but I do believe like you, never give up. You know you best. ❤️
I just went to the rheumatologist 3 days ago and they assured me they didn’t suspect anything but they ordered a ton of blood tests “just to cover our bases.” The reason I was there is because I started experiencing Raynaud’s Phenomenon on November 29th. At my Primary care doctor appointment, she assured me she didn’t suspect anything was wrong but she ordered the tests….”just to cover our bases.” My ANA came back positive. Meanwhile, every test the Rheumatologist ordered so far has come back positive. I am so frustrated because nobody has even talked to me about Lupus! So I’m just worrying about this on my own until a doctor views my results.
I hope you’ve got some answers ❤❤❤❤
I’ve been diagnosed for 11 years now, it took over a year to get formally diagnosed. It’s super stressful going through the process. I literally went through 6 different diagnoses to get to my lupus one and they only tested my ANAs when I suggested it to my doctor. Which is ridiculous considering I have 10/11 symptoms! Stick in there those trying to get diagnosed!
I love your videos, it’s nice having someone of a similar age group to mine who has lupus. You’re a great advocate and I wish your videos were around 10 years ago.
Thank you! I actually started this channel and 2010 and posted my first lupus related video in 2009 (so almost 10 years). That is crazy that they wouldn't test your ANA. This is why it's so important to share our stories.
Thanks for your encouraging words!
Out of the eleven ten came out positive for me and tomorrow is officially one year since my diagnosis. By the time I went to see a rheumatologist my symptoms were so bad, my feet were very swollen, I had joint pains, fatigue and trouble breathing I was rushed to the hospital for treatment and things only got worst, I had to get an emergency surgery because of and obstruction in my small intestine, after the surgery my mom said I spent four days in a dazed state of mind because they kept giving me morphine (I have no memory of that, she even said my family and people from my university went to visit me), I spent two month between two different hospitals hardly being able to physically get up from the bed by myself, I had to receive dialysis for two weeks until I was finally discharged and able to go home. I had to basically relearn how to walk. I never in my life expected any of this to happen to me because as a young child I was always healthy and in my family there is no history of anybody with lupus who is closely related to me
I didn't get diagnosed until almost 2 years after I started having symptoms. It's been 8 years now and I still feel like I don't really understand this disease but your videos really help! Thanks for sharing :)
Hi Samantha … i appreciate your channel . Very informative & educational. Thank you so much for sharing your journey & helping others to understand ❤❤
Thank You for sharing. I have Sjogrens syndrome. My doctor is testing for lupus, because i have alot of lupus symtoms as well. Love ya 💜
Hi. I'm currently in the same situation. How did this turn out for you? What are your symptoms? I have joint swelling, muscle pain and photo sensitivity with what I consider blisters that sometimes scar!
Great great video. Thank you, you are great!
I have been dealing with symptoms for the last 3-4 yrs!! Just recently I finally had a posture ANA test and the low platelet count with blood showing up in my urine when looked at under a microscope, it’s taken me years of going to a gastro specialist over my bowels, a neurologist over my nerve issues and so on so for me it’s take many years for me to get diagnosed with lupus and now just when I was told 100% I have lupus tests show that it’s already has caused some mild kidney damage. Thank you so much for your videos. You are a blessing to so many of us. Sending love from Kentucky 💙
Your videos are wonderful. Thank you. ❤
I went to my doctor for these scabs/ulcers on my fingertips from the Raynauds and at first they told me I had scleroderma and I had to wait a month before I got to see a rheumatologist who finally told me it was lupus.
Thank you.
So I've watched your videos for years and we've talked a few times, originally before I was diagnosed with Ehlers Danlos Syndrome, I swore it was lupus. A lot of the symptoms are the same but what no doctor has been able to explain to me is how I still have the Malar Rash and Pleurisy. Hell, I've even had problems with psychosis and low/high blood counts. Its really weird because I'm confident I have EDS and Fibro and bunch of other comorbidity conditions but hearing you talk about the criteria just makes wonder about the things my doctors have ignored, including my rheumatologist who originally diagnosed me.
Chronic pain is real. Search until you find a doctor who will listen to you believe you and discuss with you. I have found 3 in my years with Lupus. For some reason they have all been in Madison County, Montana even though I have seen Drs in 3 cities in Michigan, multiple hospitals in Las Vegas, several other states.
My rheumatologist just diagnosed me with lupus with a negative Ana. I have eight out of the 11 symptoms that you have listed. My blood work comes back extremely funky.I have low T cells and low B cells. My rheumatologist after seeing that. it wasn't even on the blood work he did. Polyarthritis is not associated with Osteo or rheumatoid and is not damaging to the Joint. It has taken 12 years of being told that I'm just fat lazy, out of shape. before I came to meet this wonderful rheumatologist who has reassured me that I am not crazy. that all of my symptoms are connected. My list includes
Raised rash on my scalp
Malar rash on my face
Fever
Joint pain swelling and stiffness
Sun sensitivity
Cold sensitivity( Raynaud's disease)
Hair loss
Fatigue
Mouth sores
Anemia
vitamin D deficiency
Concentration and depression
Headaches
Chest pain
And swelling in my lungs which is causing shortness of breath
Glad you finally have an answer and can move toward healing! The rheumatologist I saw told me I was too fat when I explained that I am in such extreme pain and so fatigued that it was difficult for me to keep up my regular exercise regimen. LOL thanks!
I still don't know what's going on with me. I am currently 21 weeks pregnant and feeling better than I have for a long time prior to pregnancy! I received a positive ANA test a little over a year ago, after thinking I had Lyme. I saw a Lyme specialist who told me I tested positive on the western blot due to an auto immune disease. I have pain in my feet, hands, knees and neck, fatigue, butterfly rash and POTS. Lyme specialist said no Lyme, sent me to a rheumatologist who told me that I don't meet criteria for SLE but have a high ANA and EOS and essentially told me to come back for more blood work when my symptoms worsen. It felt discouraging. I am totally loving pregnancy and how great I feel!
I had pretty bad discoid rash... On my face, ear, nose, and on my head (which made me lose a big part of my hair, I had to get corticosteroids injections on the top of my head to "save" the skin so my hair could grow back to normal one day).
This video is so important in so many ways! I spent 6 months experiencing the butterfly rash, discoid rash, joint pain, photosensitivity... But I waited to long to look for help. Thank you for spreading awareness 💜
It took me 14 years to get diagnosed!!
It took me 3-4 years for an official diagnosis. And 8 months before even going to the doctors because my mom didn’t believe me. My doctor said often with borderline results treatment is one of the ways they diagnose. I got better after treatment and finally got positive blood tests 6 years ago.
Thanks for the info. I've had two positive ANA tests. My doctor says he isn't too worried because they're on the lower side. I think Lupus is a good fit for my symptoms, though. Major photosensitivity, joint pain, extreme fatigue and migraines that generally result in hospital visits.
Dr House has entered the chat
I'm 63 years old and it's taken them forever! They actually acted like I was completely crazy 🤪
Yeah I don’t have 11 and I have lupus. I didn’t get here easily but not everyone fits in a box in rheumatology. It took 6 months. I had pitting edema, swollen abdomen, enlarged lymph nodes in the mesenteric tract, daily fevers, positive and highly elevated CRP, positive and highly elevated Double Stranded DNA and slightly elevated Single stranded. Pain holy shit pain. I had symptoms for a few years before but I had no idea what was going on. But October 2018 I woke up with pitting edema thought it was cardiac or venous and it wasn’t, quickly ruled out cancer and then Developed a Parotid infection. Which sucked. I do not wish this on my worse enemy. Also at diagnosis time my urine was spilling g so much protein and my liver enzymes were not good. I didn’t have skin involvement or hair loss. I was no hungry at all. I have been on prednisone 20 mg daily for 4 months and I started plaquinil and developed a drug eruption rash. So now I’m going on cellcept. I need to get of prednisone. Every time I wean I get sicker then a dog. I wish anyone going through this luck and just keep talking to your doctor. No one presents with lupus the same way. No one.
Positive Ana in July by October I was diagnosed with lupus.
It took me 3months luckily to get diagnosed coz all the signs I don't have just Neurologic probs I'm 25 and I've had two brain strokes yeay me to hell with this Lupus I love channels like this in learning a lot its been a year n 8months since diagnosis n for the first time i haven't been admitted for 8months yeay me
I have a positive ana , joint Pain daily, especially in my back and occasionally my fingers, always in my feet & knees, I cannot tolerate the sun, I occasionally get a discoid rash on my back I'm always drained & feel like I've been hit by a bus most days,I have had the shingles 3 Times in the Last 5 year's, I saw a rheumatologist he diagnosed me with fibromyalgia and stress...my ana wasn't high enough to be autoimmune according to him, my ana was 1.40 in 2015 then retested by another doctor in 2017 and it was 1.80 ..my doctor suggested possibly mixed connective muscle disease or lupus but when I saw the rheumatologist he said fibromyalgia 🤔 also just want to add I had severe preeclampsia with my pregnancy and that's when all my health problems started, I then went onto having an ectopic pregnancy a couple of years later ,and I've not been healthy ever since that was 10 year's ago 😔
Forgot to mention in my last post, my daughter also gets the headaches. She has been getting them since she was in middle school.
I have ten of the 11. I was diagnosed ten years ago.
I was suspected to have lupus but dont have a positive ana. So I was told theres not much they can do to help me as a result. However I am advocate of going back to see my gp if something happens to get some sort of help but also so it can be documented on my notes for future use when needed.
Though one time my vitamin D was low and the wether was really sunny. So I thought spending time in it would do me the world of good ironically it just made me worse off as my joints stiffened up.
Check into other autoimmune disorders and even connective tissue disorders. I spent years thinking i had lupus because my symptoms matched but I had a negative ana, I was finally disgnosed with Ehlers danlos syndrome which is connective tissue disorder. Its crazy how simpliar the symptoms are to lupus. Dont give up and never stop advocating for yourself. You know your body best.
@@Willowing_Weaver I've had EDS as a suggested look into before by someone else but im not sure if you'd be able to find a stiffer hip/knee joints than mine. The last time i climbed over fence I had to move my hip with my hands like i was some sort of robot. Though I need to look more into other connective tissue disorders as I've only done a brief look.
@@seanto6363 definitely look into other conditions, I know I have super stiff and achy joints. Its only been the last year that ive been dislocating my joints. And certain joints get so swollen that I can't even move them like my knee. I know a big thing for me is constant pain.
lizzy holbrook when you feel that you have a really bad flare get tested again. I had negative ANA at the begging and kept fighting until came up finally
I get the butterfly rash when the sun come out and it’s hot, the rash also feels like my face is burning off in that area … very painful
I have most of the symptoms but is it possible to have lupus but negative tests? My ANA came back negative
I've got negative ANA and the others are negative. TPO Antibodies (Hashimotos Thyroiditis) was positive (off the charts high). I have every marker for Lupus from the malar rash, to the nose and mouth ulcers, joint swelling, sores all over the scalp, kidney stones and swelling, severe anemia (tho platelets and white blood cells are always high), pleurisy, sun sensitivity (increases flare symptoms within 10 minutes of sunlight). My C-Reactive Protein is high and always getting higher, my ESR is high and gets higher, TPO is higher still. Looking over my tests, the one test I haven't done is the antiphospholipid test. My rheumatologist has seen my photos and looked over my tests and says that I have inflammatory arthritis with unclear focus on what disease it is. She tells me she doesn't know what is causing malar rash and ulcers and kidney swelling. There is no damage in joints but they get inflamed. I should find a new doc. Newest tests show there is an immune deficiency. The latest research shows that the ANA test may be overturned soon cause it's not as accurate as they once thought.
Just wonderful, I been tryin to find out about "systemic lupus treatments" for a while now, and I think this has helped. Have you ever come across - Denmelia Jansabella Builder - (do a search on google )?
It is an awesome one of a kind product for discovering how to treat lupus without the hard work. Ive heard some pretty good things about it and my mate got cool success with it.
Thank you, I just appreciate you saying that you understand and believe. I am 3 months with this flare up. I can't wait get in to see a rheumatologist even with a referral, +Ana's, homogeneous 1.160 + in September and same in December along with the fact I have days I can't walk, I I can't drive. I I use a cane which I can barely hold myself up with because of weekness. The Nurse Practioner keeps sending the referral without something, but first no labs, and DX of Malise, she didn't mention that I have Graves disease And my Thyroid was radiated and 30 years ago. The wait to get in is now in September 2020. I can't go on like this. I I can't work anymore so financially I'm done. I feel like Noone listens, I'm on Medicaid now If I had private insurance I would be in. I I even have labs from the Mayo Clinic. Any advice? I spend day after day calling doctors, and I I don't have much I. I have have had this flare up for over 3 months now, my vision is going. I am changing my NP (Dr) Monday I cant keep seeing her. Do u have any advise. I'm losing hope.
2 Years! since the begging of the symptoms. I´m from Mexico.
I've had "positive" and "negative" tests since 2013. It's so frustrating because I can't be treated since it's so inconsistent. The doctors just tell me to "take it easy." Did you have any experience with that? My ANA comes back different every time.
Can you please tell me: Do the lab tests (especially blood counts) show up (Lupus related)when you are in between flares? Thank you so much. Videos are a great resource!
Great video💜💜💜!!
Does anyone with lupus just get random swollen lymphnodes in their neck every once in a while?
I have a positive Ana but was told I don’t have lupus but fibromyalgia instead.
Which ANA came back positive? There are different kinds of ANA.
Living Free Forever - Melody & Ric Schafer Oh trust me I already know that.
So she’s not asking about centrinomes. In fact centrinomes are not required for diagnosis for lupus actually. Antibody type is. Some people never pop a centrinome type. One thing to keep in mind is there are variances within each lab regarding ANA as well. So what I’m getting from this is she had a positive ANA but not a specific type of antibody needed for diagnosis of lupus. For example I’m smith and DS DNA positive and that’s all she wrote. Centrinomes can help when the ANA sub type is equivocal and again that’s a lab issue.
I was told I have Fibromyalgia which I don't doubt but I also have Lupus specific symptoms including butterfly rash and low grade fevers. In the past my ana was negative but I think I might ask to be tested again.
Very nice video !
I have the malar rash, I get the discoid rash when I’m in the sun, mouth ulcers on the roof of my mouth, arthritis is hard, I use a ton of lidocaine cream , serositis, neurologically I have a problem with memory, anemia and my ANA+ abnormally high a abnormal homogenous pattern. My dx is undifferentiated connective tissue disease so far not lupus.
Homogeneous pattern is often Lupus or RA from what I have researched. I understand there is an ANA test they have used forever and now a newer one that some scientists are fond of. Makes me wonder which labs are using which tests....the old one or the new one and how many mistakes are out there...I've read sometimes a report will say we have one type of pattern when in fact it was a bit mixed. Hard to say. Makes me wonder if sometimes many of the similar type of autoimmune disorders are more related than they think or even overlaps. Often treatment can be the same...all depends. I wish you the best.
It took me a year & a half & i tested positive for anti nuclear antibodies ,amongst uveitis in,my left eye that led to my retina riping & ventra detaching in 2010 & 2011 had to have surgary i have sun intollarance ,i have to keep my whole body covered even in the winter in summer alwys wearing long sleeves & hats year round,i get shingles all the time & mouth uclers Pyricrodidis sorry bout that spelling anyways to many inflamtory things to even list i beleive ive had it most all my life ..oh yea plus hives
I need to ask a question my APTT came back flagged and really high is this positive for lupus because they did think it was MS
I get discoid "rashes" on my scalp and face. I usually get the butterfly style discoid rash, but sometimes it can go down to both sides of my mouth and up the bridge of my nose into my eyebrows. If it gets into my eyebrows it will usually go up my forehead as well and into my scalp and behind my ears. It sucks because the hair at my hairline, and some of the hair on my scalp, will fall out when this happens. I lose handfuls of hair, no exageration! When it does clear up (tmi) all of the skin flakes off. So hard to keep my hair and scalp clean and moisturized. If I don't wash it several times per week it's disgusting, but if I do its super dry and it flakes even more :-( .This type of rash is very painful, in my opinion. To the point where I can barely move my face without some part of the skin on my face or scalp cracking and bleeding (think dry lips). Attempting to cover it up with makeup is not an option for me. It would just burn and make it worse. I purposefully got oversized prescription glasses in attempts to cover it slightly when I am out in public. Depending on the size of the "rash" it does make it less noticable, but they can irritate the area at my nose where they rest. It sucks, but at least I don't get as many stares. I use hydrocortisone on my face (and sometimes my scalp) to control it, but I was warned not to use it to often because my skin was lightening. Hopefully the hydroxychloroquine will rid it for good!
My daughter has been diagnosed with sjogrens and then additionally fibromyalgia since she had migratory pain. She recently had an endometrial cyst removed from her ovary along with other endometriosis in her abdominal cavity. She has a severe case of endometriosis so we’re now wondering how much of her pain has been caused by that. We’re not positive she has fibro at this point.
symptoms started for me in april and i got diagnosed in june
A year ago my ANA was high but then last week they detected none. I have been suspecting I have lupus, but Ive been waiting a year just to see a rheumatologist. But now my ANA is negative, I'm not sure.
Why did it take a year to see the rheumatologist? What country do you live in? I hope you’re feeling better and get the correct answers to your symptoms. I know how difficult that can be.
how did you get your numbers low?
Andrea Aldrich my ANA test was negative the first two times I took it then the third time it was positive I also have an autoimmune liver but do not have hepatitis I think lupus is attacking my liver I also have low pulse pressure which is indication of heart failure I get chest pain often I also have low blood pressure cold hands and feet I keep my house at 78 degrees still cold sometimes sore muscles sensitive to the touch always tired I also have the red cheeks hope that helps thanks
It took me five and half years to FINALLY 😭 get diagnosed! Last March so almost a year now.... It's been a rough year, I have systemic lupus and I have almost all 11 makers... No kidney or liver issues right now! Mine has been joint pain in my hands, hips and knees, lungs ( bronchitis, chest colds and sinus issues) also dry mouth & eyes!
I just did 8 weeks on Plaquenil and thought it was lowering my immune system has anybody else had this issue? I'm off of it right to see if I can recover because I did 24 days of antibiotics and 7 days of steroids, I was sick constantly!
So far I'm not having major reactions to the sun but was informed that I have to use sunscreen and be careful!
I think I have it for years ; but no one believes me 😰 it’s hell
My dermatologist suggested that my lesions are discoid lupus.
I have a sore above my eyebrow and below my lip and my while scalp is covered in boils cause from me picking at it..
I wouldn’t t wish this pain upon anyone as well as the fatigue and lifeless feeling that I wake up with..
the sores are horrible they sting, when I go in the sun or if I sweat the feeling of it is almost like someone is lighting me on fire.
Not pleasant at all 😣
And have also woken up today with ulcers all over my tongue 😫 I feel like I can’t win
About 7 years!
Iv had lupus for a long time but never heard of it till it got my kidneys
Can you explain how we tell our family how serious lupus is...... they don’t seem to realize the seriousness of this disease
What can I do to treat butterfly rash?
7 years to get diagnosed and still to this day if I got to a new rheumy they will start telling me that I don't have lupus !!!! I AM SICK SOMETIMES VERY SICK
Use Dr Omo herbs it will help you
@@joycenurse2894 Thank you.. I am going to look into these
Hi, how long did it take for yalls ANA year to come back please?
I had ANA at 320, and in constant flare with painful feet, joints, and terrible rashes - sun related, not malar. Dr still seems to think border line. Of the 11 criteria I have 4 but flare feels constant now 99% of the time for last 2 years. Suddenly started in end part of pregnancy/giving birth
Trying to figure out what I can do to minimize flares. Also stay in South Africa so temperatures of 37 degrees most of the year not helping!!! 🙈
I was borderline positive for ana & ds-dna, but a few months after that the results were negative. So I'm not diagnosed yet.. But I'm also HLA-B27 positive which could mean I have some sort of spondyloarthritis. It's so hard to tell if there are no obvious signs!
HLA -B27 is actually positive in 30 percent of the population. All that means is that people with AS, ulcerative colitis, and other conditions are found to have that antibody. It’s not a diagnostic tool in itself.
Do you have to have all 11? It was suspected I had lupus but it was decided it’s RA but I’m not so sure. I get the malar rash (although it isn’t raised on me at all....just extreme redness across my nose and cheeks), I have severe anemia, arthritis, and possibly a couple other of those. My rheumatologist told me RA and lupus are very similar though but he also said many of the treatments are the same for both diseases so it was almost like either way it didn’t matter.
For lupus you would have to have at least 4 of the criteria. They are similar, but RA is more damaging on the joints. I had a friend with RA and our treatment routes were slightly different.
Live Hope Lupus thanks for responding!
I think I need to have the rheumatologist explain more why he says ra and not lupus. I’m also considering asking for bone scans which would show joint damage more.
Lately, skin on back feels like its on fire like shingles. Sulfasalizine not good for me, be careful with this medication
I would greatly appreciate a reply! I have SLE and I want to start an advocacy for lupus on youtube but idk how to go about it.. can you help?
I am thinking I have lupus and my doctor said my ANA was elevated so does that mean that it’s higher than it supposed to be?
4 years and over 40 doctors to finally be diagnosed 😩
Thank you for this video! I am going through diagnosis now as I think taking Humira for 10 years has caused me to have lupus. But I work out every day and it's the only reason why proper filtration happens in my system. My kidneys started taking a nose dive as well as a gradual decline of red and white blood cell counts. My doctors think I'm making things up. This is an awful demeaning process and I still dont know what's wrong. Also, my discoid rashes start at my ankles. Anyone
Had problems for 2 years and have been misdiagnosed..... and now I'm trying to get a second opinion but this lazy doctor does not care
Rash on cheeks, forehead