I was diagnosed in 1994... After 2 yrs of frustration... Probably a year before that i started loosing weight and very Lethargic. But kept being told there was nothing showing.. I was down to 105lbs. Everytime i went in with a new symptom the office staff gave me the feeling of ( oh shit this woman is back again ) When the doctor gave me the diagnosis he basically told me to prepare for my death. I had 2 open heart surgeries since being diagnosed .. And i actually died after the 1st one. ( Medical records show i was gone 26min ) They told my family i would be nothing more than i was in the hospital bed at that time.. But i had Angel's watching over me. I chose to fight like hell.. My Children were my strength. Hugs to other Lupies
My ANA was high. CRP high. I have most of the criteria My skin is awful. Butterfly rash always. Lupus is brutal. Bless you all. I had symptoms since childhood. That was a long time ago as I am 53. I was dx 2010. When I finally could not function anymore bc of fatigue and pain, I gave in and went to a rheumatologist. They took one look at my tests and me and knew it was lupus. Lupus has cost me my career, hobbies, and a lot more. I struggle with depression and anxiety. I went from an active life to pretty much homebound. Keep pushing through. 😊
I've been misdiagnosed since 2010, and was just properly diagnosed last week. it got to the point I was in a wheelchair for two years. I love your channel, and look forward to videos to come!!
jason david Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities. Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back and I'll send further details. Thank you!
Winner of a video, been searching for "medications used treat lupus" for a while now, and I think this has helped. You ever tried - Denmelia Jansabella Builder - (search on google )? It is a good one off product for discovering how to treat lupus minus the hard work. Ive heard some unbelievable things about it and my brother in law got amazing success with it.
I'm still going through getting a diagnosis but it has been so painful trying to get doctors to listen 🤦🏼♀️ When I was 17 I kept going back and forth to the doctors telling them i knew there was something wrong and they kept telling me I was a hyperchondriact and sent me home with antibiotics 6 times. Turns out it was cancer. I love you hear other peoples stories 🖤 it makes me feel not so alone. Youre doing an awesome job girl 🖤 youre amazing x
I have had some weird skin problems on my face so I went and saw the doctor and I guess she thinks it looks like the butterfly thing. So she immediately wanted to get a blood test and this was yesterday. Now I find out that the results look like it could be an autoimmune disorder. Man, this all makes so much sense. I have so many symptoms that I've had for years and I'm thinking I might have lupus. This is blowing my mind right now. I've had so many problems and finally it sounds like we have an answer. I'm shook.
My first signs I wad 14. I am 36 now and was just diagnosed this year. At my annual yearly for over a decade I reported fatigue muscle and joint pain with random sharp chest pain. Tests came back and constantly told me nothing was wrong. 2 years ago I got a new dr who never gave up. Its all about the dr you choose.
Same story. Joint pain for years and now butterfly rashes. Ana came back negative so my doctor gave up. Going to see another one on Wednesday. Hope they try more tests
It took 6 years for a diagnosis of lupus and all the others...many docs...they just never run labs..until one doc first thing out of her mouth was sounds like you could have an autoimmune disease..well I had 5..and I think lupus has attacked pretty much every organ now after almost 9 yrs after diagnosis. I think I'm up to 18illnesses now..hugs💜
Shena Dawn Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities. Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back and I'll send further details. Thank you!
I am 55 years old and was diagnosed 9 months ago. Last summer I had some severe back issues which a pain specialist finally got under control. When I went to my regular oncology appointment he was concerned about the back and started asking me a lot of questions. He finally said he thought I had an autoimmune disease and wanted my primary to run an ANA panel. My primary did and it came back positive in several areas. She sent me to a rheumatologist and he redid the blood work and took lots of x-rays and confirmed I had lupus. In looking back I have probably had it for 15 to 20 years and did not know it (that is when the nose sores started, I had mouth sores about 5 years prior to that). He put me on plaquenil and just last week added cellcept. My body is in attack mode at the moment.
Not had a diagnosis but have had rashes, joint pain (moving to various places), morning stiffness, fatigue, irregular heartbeat,light sensitivity and dull headache for over four years. It’s good to know that others have gone through the same miss diagnosis route, it’s so frustrating to not know what’s going on.
Sonja Chancellor I have the same issues. My CRP and sed rate were really high but my past Ana always comes up negative. I have 90% of the symptoms listed for lupus. I’ve been trying to figure all this out for 6 years. I’ve seen 3 different PCPs and one Rheumatologist who are all confident it’s lupus but can’t prove it with my ANA tests.
@@melissalamb2534 i have almost all the symptoms and in fact almost went into cardiac arrest last week when my new imitrex prescription constricted blood vessels in body and made my heartbeat irregular and horrible chest pain and jaw pain. I thought I was dying. but i've taken ANA test twice so far. Once almost two years ago and once about 8 months ago. Negative both times. All autoimmune panel is negative EXCEPT TPA which is soaring high off the chart. That's for my Hashimotos Thyroiditis. Now have a tumor on thyroid....crazy. dr believes i have lupus but early stages. Malar rash, swollent joints, hair loss, mouth and nose ulcers, kidney issues, lung and heart issues, massive migraines. Not sure why Ana is negative twice.
Ohhh my gosh! The 3 things you said you were possibly diagnosed with in the beginning I was also 3 weeks ago. I was then given a blood test that was positive with ana & sent to a Rheumatologist. Today... my Rheumatologist had my get a 12 panel blood test to find out exactly which ana I have. I've been dealing with many skin, brain, heart issues since 2013, but not at the same time. It's been very frustrating not knowing what's wrong. I finally had enough when 3 weeks ago all my joints were stiff, red, and inflamed, so I took off work and that's where my Lupus journey began with DEMANDING an answer! We'll see next week what the tests say. Thank you for your story as is helped with mine❤
@Candy C doctors words "I don't want to diagnose you, cuz then I have to treat you." All 11 came back normal or ok ranges. However, she gave me Plaquenil to see if any changes & kept me on low dose steroids. Not much change except pain & whaaat looks like psoriasis is going away. I see her again in another month. I'll update then:)
@Candy C thanks, i'm for sure trying. To make matters worse, I lost my insurance this week, so don't know what on gonna do at this point! Thanks & I'll keep in touch of what going on from time to time 💖
7 years of being diagnosed with arthritis, and I finally got the lupus/mctd diagnosis. I said from the start that's what I thought it was. But my last med change resulted in neuro problems, massive DLE skin flare up and changes in my blood work. I'm also being tested for MS. My mom said I've probably had it my whole life (I'm 35) but doctors didn't take her seriously and said it was growing pains and eczema. I live in Canada if that matters.
I had my first pulmonary embolism when I was 19, and they chocked it up to birth control. Later they diagnosed me with 2 blood clotting disorders. I had clots during pregnancy 6 years later, and again bilateral pulmonary embolism last year. FINALLY, after losing so much hair, swelling to the point my skin was hot and tight, having rash on my arms on and off for years, pleurisy, fatigue and this constant pain I've become so used to I just assumed everyone felt like this, i was diagnosed in April 2017. I got a new doctor when I changed insurance and I went to her to see if she'd give me blood thinners and medicine for the nose ulcers. She just happened to be a rheumi too 😊 It's almost a relief. I don't feel so guilty about being so tired all the time.
It took about 2 years for me to be officially diagnosed. I had normal bloodwork taken for a check up and my liver enzymes where high and that's when all the testing started. First I had a rash that was biopsied and tested positive for SCLE and then I got the positive ANA. Along with joint pain and fatigue, it all added up. I think I've dealt with the fatigue and joint pain for years beforehand and I was so used to it, I just thought it was normal. It's been a strange journey but it's great to see someone like you making these kinds of videos! No one my age (I'm 22) knows or understands what it's like.
God bless you Hon for this video. I have been not well for a few years. Dismissing much as just weak immune system. In this past year I really lost ground. When I started losing my hair and noticed blisters cropping up on my scalp and body from sunlight, and even florescent lighting @ church & in stores. Not to mention the extreme exhaustion, pain and many other symptoms. I saw my primary who referred me to Dermatologist. I am definitely a classic lupus patient. It would be very hard to actually pinpoint exactly when this began as I have suffered many afflictions for so long. After the passing of my twin brother in 2018 I believe it came full circle. We really have to be aware of our health. Doctors need our help in diagnosing. I pray research will find the cure. You are so young. Having a god support group is essential indeed. My prayers go with you and all who suffer these dreaded diseases! God bless you for all your help. You are making a difference!
I have just been diagnosed with lupus. I’m 60 and also suffer from severe Copd. I have now been retired from work due to my ill health. I was really bad with skin rashes all over my face arms and scalp. That was over 12 years ago. I have to admit it’s not as bad now as it was then. My hair fell out and found it difficult to go to work. I was employed as a janitor and some of the looks I got from the kids made me feel very low. The medication for lupus is interfering with my copd and arthritis. At present I’m on high dosage of steroids which I find helps my arthritis but they are messing up any antibiotics I require weekly for my copd. Difficult to work out what is worse. Thanks for the video it helps to know I’m not the only one as it’s more rare for me being male
I have only tested ANA positive 2 times in 25 years. SED rate varies high low. It's taken almost 10 years. It was actually my dermatologist who got frustrated and started ordering a lot of extensive testing and biopsies of my lesions and made the diagnosis of SLE forcing my rheumatologist to start actively treating me. I had complained to him for years about joint pain and swelling, extreme fatigue, mouth sores, hair loss, I could go on. He diagnosed me with fibromyalgia and stopped exploring anything else. Thank god for my dermo. She says I'm sero negative SLE anyone else with this diagnosis?
THANK YOU ! so much for your comment. I can't tell you how much this has helped me...I tested negative on ANA initially, now they're finally running a lupus panel. I have like, eight of the eleven symptoms for almost three years. No one, including me, could put 2 and 2 together. I mean, who goes in and says, well, I'm exhausted, plus I have a sore in my nose, and I can't stand being in the sun. I sure didn't I just thought 'well, I'm really weird, AND really sick'.
Just starting down the path... 58 year old guy. Positive ANA, speckled, 640 titer. Low platelets and whites. Butterfly comes and goes, LOTS of joint and muscle pain. I also have the cognitive dysfunction, which for me is mostly getting words out and short term memory. Two problems: I have CVID, which means I no longer manufacture my own IgG, and many of the markers for lupus are on the IgG antibody. I pump in known good IgG as replacement therapy so the test of those markers always looks like I'm perfectly healthy. One Rheumatology practice wouldn't even see me because of the CVID complication. Second - The first available appointment for the practice that will take me is three months out. In the mean time, I'm learning all I can about what I might have. Your video has been a rely big help. Thanks!!
I've had symptoms for some time now my dad and my brother both have been diagnosed with Lupus anticoagulant and are both on Lovenox shots. This particular strand of lupus requires a Russell's Viper Venom test. I cannot afford the test at this time, I am going to a free clinic but it has been about 3 months since they tried to get the test for me. I have episodes of shortness of breath dizziness, bulging veins, suddenly in my left leg and chest pains, arthritis in the mornings and fatigue and going home early from work occasionally due to these health issues. I also have a butterfly rash on my face oh, I have had two heart attacks and I don't smoke I drink occasionally. God bless you and thanks for your video
It took me 5 to 6 years to get an official lupus diagnosis. The whole diagnosis process started in 2002 but I was definitely having symptoms for at least 4 years plus before that. I don't know what my anti DNA was when I was first diagnosed but it's always positive on my lab work even if things are otherwise under control.
I'm 20 and I have had symptoms for at least 3 years, was misdiagnosed/treated for Lyme because my ANA was negative after going to the doctor with a discoid rash on all my joints. Within the past few months, my symptoms got more severe and I got an appointment with a rheumatologist who immediately suspected lupus despite another negative ANA. As of now, I am on Plaquenil without an official lupus diagnosis to see if it works. I've only been on it for 2 months so we are still waiting to see if anything improves. Other than the one possible discoid rash 3 years ago, none of my symptoms are necessarily unique to lupus which is why my rheumatologist is reluctant to make a formal diagnosis, but I'm just thankful that she was down to try plaquenil so maybe ill have answers sooner than just waiting for a positive ANA.
I'm a guy and in the process of figuring out what is 'wrong'. I have the butterfly rash and my left knee can get pretty swollen at times, which is how all of this got started for me. I'm taking the diet route (plant-based, low fat) and since then my knee has healed quite a lot. And my blood tests were good according to my rheumatologist. I took the ANA test and tested positive the first time and negative the 2nd time. My blood platelets + vitamin D levels are low though. I suffer from quite a lot of fatigue which I didn't hear mentioned in this video. Who else is doing the vegan thing here? :) Cheers for the video, great initiative.
So ANA gets negative and ur not a lupus?..do u do a dsDNA test?..My ANA was postive...had rush...fatigue...but my dsDNA came negative...My blood count is normal..is it a false positive then ur ANA?
My daughter's first ANA came back negative, but she still had symptoms of Lupus. They did the test again, and it came back positive. She was diagnosed with Lupus within a few months. I personally asked them if this could be Lupus because she had so many of the symptoms, but I knew it could take years to diagnose. They told me her symptoms came on so strong and sometimes children/young adults can be diagnosed easier because they have stronger symptoms than adults. She was diagnosed at Stanford Children's Hospital. She had a fever, sores on her legs, her whole body was full of water, she was anemic, fatigued, shortness of breath because the water was surrounding her heart and lungs. She also had joint stiffness with pain. They did all the necessary tests, including a kidney biopsy, and determined it was Lupus. We have not seen any sign of the butterfly rash, hair loss, or mouth or nose sores.
sacgirl44 I am sorry to hear about your daughters diagnosis. I was a pediatric patient when I was diagnosed and it all happened very fast as well. Wishing you all the best. The beginning years are tough but eventually she will begin to learn how to listen to her body. I hope the initial treatments help her too.
I was diagnosed a while ago. I was living with unbearable pain, headaches and I was losing weight. My ANA was high and my tests came back flashing red lights. I had tons of blood tests and was diagnosed with rheumatoid arthritis first. My skin didn't have the butterfly rash so people decided I just had arthritis and wasn't getting sleep. My urinalysis took a long time to do. I'm sensitive to the sun, and I have to be careful not to get sick. I also have anemia. It turns out a miracle medication I was supposed to take could cause macular degeneration-good thing they caught that.
I'm in the process of possible diagnosis right now. I just did blood testing and the urinalysis test and waiting on results now. I've already been tested for arthritis and gout but my doctor is now testing for lupus, acute gout, or, through the process of elimination, chronic fatigue syndrome. Its been only a year since I started having notable symptoms.
hi. could you make a video related to what to eat n to avoid.what happens to our body when we eat what we arent suppose to eat. or a diet for lupus. that will be very helpful for me
LiveHopeLupus thanks. because i know that we arent supposed to eat lentils but in my case i hadnt seen rashes or something yet as when i eat any other bean.
I started getting symptoms when I was 17. One Dr told me I had lupus, and one told me I didn't. I always knew I did because I was getting pretty much all the symptoms. But they didn't tell me I for sure have lupus until I was 29 or 30
ANA 2,045 Once it became obvious something was seriously wrong with me diagnosis only took six weeks, or so. 9-11-15 was the day! Before 2015, my symptoms were fleeting and hard to nail down. It's my belief I've had some sort of autoimmune activity going on most of my life. I can remember seeing livedo reticularis on my skin when I was in Kindergarten. Weird skin rashes would come and go in my twenties. I have a photo of me with a butterfly rash in 2001. Lots of instances of weird joint issues... The list goes on. Thank God for Prednisone and Benlysta!
My ANA was in a similar range. I want to say around 1800. Like you, mine went rather quick too! Glad the Benlysta seems to be helping you. I'm hoping to get back on it in the next few years.
Also my symptoms started years ago but were so vague til nobody really knew what was going on. I have no insurance so I had to pay for my tests . I used my stimulus check for the more expensive ones. Maybe that was bad but my health is more important to me so that I can hopefully get healed and live a better life in society
Thanks for your wonderful video. My daughter just got diagnosis lupus recently. She's just 22. She is in college .I am more worry about life after lupus is anything you can share with us. After lupus, you can go to work, go to school, get married, have a normal life as Normal people. ???Thanks.!
It's so sad that I have most of these symptoms also pain is horrible:( I'm in the proses of getting a diagnosis😖 I've been in pain for over a year!:( You are doing so well Sam keep it up❤️
ive been suffering almost 6 years now and had to live several years suffering not having insurance. After i had insurance i was nearly suicidal, still am probably more than ever, but doctors thought maybe MS they didnt see the markers they wanted there and as Ive started developing some new symptoms I put them together with very old symptoms and Im thinking lupus may be the answer to my mystery illness but I cannot wait another 6 years to be diagnosed, I am 37 a mom of 3 happily married but I will take my life before I go another year suffering this way in front of my family and them having to take care of me. I feel like my kids and my husband deserve a healthy mom, the old me. It has stolen my energy Ive gained a 100 pounds, my hair has been steadily falling out daily for 5 years to thin barely there, it stole my career I worked in pediatric dentistry but my pain, short term memory loss, and uncontrollable small motor skills as well as sitting in an operatory for hours stole all my hard work and love for my profession. It stole my favorite thing to do, the beach, travel, playing with my kids, being able to make appointments or even have the energy to shower everyday. Im at a loss, hot tubs, out of the question, hot showers my skin will burn like pin pricks and come out with red splotchy arms. I can't take it anymore, Ive been hospitalized, thrown up uncontrollably, got horrific anxiety attacks for no reason, horrific insomnia, hop pain that would kill a person, fluid build up in feet, ankles for no reason, painful feet, my left ankle will feel like it needs to pip then proceed to hurt like I broke it for days. Hip pops in and out. Wth is happening to me? Who can diagnose me, Im starting to feel theres only one way out of this torture.
J Mac stay strong!! You need to continue fighting through this. I know it’s hard as heck but you are loved and needed by your family!!!! I’ll be praying for you!❤️❤️❤️
Claudia A thank you, its worse than ever though. Im trying but even with my insurance it was 350$ up front to see a rheumatologist so I had to leave. Im at the end of what I can take.
I’ve been having symptoms since I was 16 and didn’t get diagnosed till I was 38 ! Crazy I know !!!! It wasn’t till my blood test for the white blood count came bk very low , they referred me to hematology then they did more blood work there and my ANA came bk positive (1:160) then they referred me to Rheumotology and that’s wn all my blood work and symptoms screamed lupus to them .
Really scared. First seizure last week... 10% guys get it(win),3-6% get the aggressive strain(win), dad, married 25 years next year with three girls and now I'm "handicapped" and it scary.... .....😓
Hi, I was diagnosed with lupus a couple of days ago. I'm totally new to this disease. I first started out with a rash, it was all over my arms, my stomach, and my thighs. I immediately went to the doctor thinking I was having an allergic reaction or something. I'm glad my doctor decided to check me for it, it was 100% lupus, no allergies. I also suffer from type one diabetes and hyperthyroidism as well...
i’m 14 years old, and i just got diagnosed with lupus yesterday. the only symptoms that i have were a very low white blood cell count,fevers every day, shortness of breath, and extreme fatigue. i’ve been sick for a little under a year, and at first they thought i had lymphoma for a few months (cancer) i have 3 very swollen lymph nodes and that was really concerning to them. i’ve been seeing a rheumatologist and she finally diagnosed me :)
I had joint pain in my hands and feet. Doc said that's abnormal and did full blood count and ANA test. My ANA Test came back positive 1:160 with the Homogeneous pattern.... I got referred to a Rheumatologist and just by looking at my blood work she said the likely diagnosis is SLE and after an hour of consulting she officially diagnosed me with SLE. It took 3 weeks to get a diagnoses. I don't have the skin symptoms at all tough.
hi! im glad you got your diagnosis so quick! i also just got my diagnosis and it was also within a matter of weeks and i was just wondering if other than the ANA you had any other abnormal blood results? My doctor diagnosed me based on my clinical symptoms and positive ANA and im not too sure since my other blood work like complement levels, WBC, RBC, SED rate and all that is normal. i hope youre able to explain so i can understand a little better!
@aimenkhattak4943 Hello! I was just told by my neurologist that my ANA antibodies are positive with Homeogeneous Pattern 1:320. A lot of my blood protein levels ( Beta Golbulin, Globuin and Total protein)are flagged as high with C3 serum flagged as high also. I have a lot of symptoms like hair thinning and balding, joint pain, stiff joints with cramps, muscle weakness in arms and legs, itching with no rash, electric shock down my neck when I move my neck, cog fog, cramps and spasms all over my body with tingling and twitching, tremors after I lift something, fatigue, body aches, burning sensations in my joints like they feel warm too the touch sometimes, clumsy by running into objects and walls, and last month I had some difficulty walking and with balance issues. Also I have my first psoriasis patch on my thigh. I told my neurologist that I believed my symptoms where related to Multiple Sclerosis but after my blood results she referred me to a Rheumatologist. I have an appointment with them on July 11 and I'm nervous because there is lupus in my family ( my aunt and her daughter my cousin on my mom's side have lupus). Is it possible to have more than one autoimmune condition or are my symptoms pointing toward Lupus? I've been doing research and a lot of symptoms overlap with different conditions like MS, fibro, Lupus ans RA.I just can't wait for my appointment 😔
I went to the RA doctor in December of 2015 for fibromyalgia and the doctor noticed the rash on my face, neck and arms. My next appointment in February of 2016 is when I was able to show him pictures of my rashes, fevers, mouth saws etc. today I still don't have a positive result of lupus but have all signs of lupus. I had my appointment with my RA doctor today and it didn't go so well. I have a lot of trouble walking lupus sucks. It does take a long time for positive results to come out but for lupus to destroy your body it happens really quick.
Vilou Creations trust I’m now diagnosed with SLE but it took me 4 years they even said is in my head lol so it will take long time and until your body is totally damaged before they say anything
Sense I was 16 I have been told I have fibromyalgia. May I turned 22 and the past few months I’ve had arthritis symptoms in almost every joint and major issues with being tired and weak and feeling ill. When it started they did all these tests in this video. They said I had a false positive for lupus. My ana was positive but when they did the blood count and swelling tests they didn’t show anything. Comes to find out there is people in my family that have lupus and it’s can be genetic or run in family’s. Sense those tests I’ve gotten worse. They put me on an arthritic medication. It works but I still feel it if I go outside. I have 6-11 symptoms of lupus. 3 weeks ago I had surgery for a migraine stimulator. I have a week left till I’m fully healed. I’m currently starting to have problems with my two favorite foods dairy and bread and I feel sick constantly. I still feel weak and tired and just not liking food when at this point I should be healthy and starting my work outs but I can’t do anything more then watch tv play video games and forcefully make myself cook food and drive. I’m kinda flipping out cause I wanna keep talking to my docs about this but there so busy and I have to wait 3 months to see them next but I need to go back to work
I'm currently 14, it took me about 1 year to get diagnosed, but I had been experiencing symptoms since age 11. Thankfully my case isn't very severe, currently and my main struggles are with RA, fatigue, rashes, and many infections. I'm very glad and thankful that I have a minor case. As of now, at least. Hopefully for a while, too.
I’m currently 14 and have been experiencing symptoms for one year. I have chronic pain and stiffness, fatigue, dizziness, pre syncope, high heart rate, high/low blood pressure, irregular hear beat, shortness of breath, chest pain, protein in urine, joint swelling and redness as of course the butterfly rash. I’m currently trying to be referred to a specialist. How are you doing now?
I do not have a positive ana, I did 6 yrs ago but not any longer, I have all the other positive markers for inflammation, c3 c4 complement, extremely high sed. Rate, decrease red and white blood cells, crp is high, I have Hypergammaglobulumia, I meet the criteria, Raynaud's ect, but because my ana isn't positive they would not diagnosis me well 4 days ago I was diagnosed without a positive ana, I was told not everyone has a positive ana, I have other autoimmune diseases and my ana has only been positive once, I'm just thankful to finally be able to have a little piece of my life back
My doctors think I have lupus but the problem is that it's hard to diagnose if ANA comes back normal or unsure and that was mine but I have a butterfly rash and very sick and it's hard to deal with without medication to help me. When I have flare ups it's awful. The reason they think it's lupus is because of my unexplained fevers and a bunch of other stuff but I just hope I get answers soon ( I'm 14 and this started when I was 6 but then it stopped and started really badly when I was 11 and we have been trying to figure it out since I was 11 when I got extremely sick ) school is a major problem for me tbh too. I hope you're feeling better ❤️❤️ also I have like 6 of the 11 criterias and it's just annoying I'm so over it going to get blood work every months it's so annoying.
My ANA was 1:1280. Speckled. A dermatologist sent me for the blood tests because of the malar rash that I had. I have every symptom. Ittook me almost 7 years to get diagnosed and I have had signs of this for many years since my teen years.
Going to rheumatologist for the first time monday, a couple months ago my PCP did bloodwork and my ANA levels came back at I think it was either 1,080 or 1,280 and that was finally enough for him to give me a referral to rheumatology. My guesses based on research I've done and symptoms I have are that I have hEDS or Lupus, but I could be completely wrong.
I was diagnosed 2003 with SLE and it took a trip to the ER.For about a month or two I was losing weight rapidly, I had the mouth and nose ulcer and of course the famous butterfly rash. they did all those blood test you talked about and after a week I was diagnosed. Ever since, I've been taking Prednisone, Enalapril, plaquenil and benlysta infusion.
I have had symptoms since I was literally 5. The first 10 years of me complaining every doctor discarded basically every I was saying until I was about 13 but still no one had any idea what could be wrong with me (and neither did I). I turn 20 this September and I just got diagnosed. My general practitioner did some routine blood work because I was having extremely low B12 levels and decided to do an ANA test because she was suspicious of lupus and that is how they connected the dots. At minimum 6 years later...
Worried I could have this I've only had the raised sun burn rash twice but have hip pain and migraines constantly and have an esr steadily raising was referred to the rheumatologist yesterday.
I've had the butterfly rash for years and my doctor brushed it off as psoriasis and now that I work in a hospital I was told to get tested for lupus after they say other symptoms I showed. I was 12 when I started having symptoms I'm almost 20 now.
Thank you.. As you know you need to fight , and beyond what the doctors tell you. Do research. When i was diagnosed LUPUS was still very much not much knowledge of the disease . I Love how you thought to do this series of video's. Much Love to you
I gave up going to the doctors for this. Years ago, maybe 5 to 6 years ago, I went to the hospital in pain. They didn't give me the Ana test. But they gave me the d-dimer test that came back positive. They ask me do lupus run in my family I said no because no one on my mother side have it and I'm not close with my father side so idk. I went to a rheumatologist that was out of network which I can't afford, she said I have arthritis from my x ray. Still didn't give me a blood test. I recently went to the hospital and the blood clot test (d dimer) came back positive again. These doctors in this small town seem to not know what they are doing.
Omg ! Did they put you on a blood thinner ? I had clots while pregnant, they definitely should do a coagulation test & you on a therapeutic dose !! Prayers
I'm 36, I haven't started testing yet but I'm almost certain thats what is going on based on symptoms I've had my whole life but the butterfly rash didn't really start until about 7 years ago plus, I have an aunt and cousin that have it.
I've been struggling my whole life. I am meeting with a doctor soon to hopefully get tested for lupus. If I have it then I was born with it because it would explain my bad heart. I'm 23 years old and have still not had a doctor who will listen and understand that I am in so much pain.
Really liking your videos I was diagnosed when I was 16 was out of remission for 2 years was able to get into remission for7 years stayed healthy and worked out 5 days a week 2-3 hrs days that I was able to completely be off all meds but then moved to colorado 2 years now which shocked my body never been in a winter climate and I am on 6 diff meds I am out of remission and now also diagnosed with fibromyalgia too now been through 2 winters here and its made me into a darn vegetable having to be in and out of the ER I hate it!
Such a frustrating journey to diagnosis. I'm about 3 months in after first symptoms and getting really sick. I have a positive ANA (speckled 160), positive SSB, positive salivary gland scintigraphy, negative lip biopsy, severe muscle weakness & spasms but with a normal CK, and kidney involvement. Doctors are thinking Sjogrens (small possibility Lupus) but half my tests are negative and half are positive so I'm stuck with no treatment until I get worse 😣
I had been seeing a rheumatologist for 1.5 years before I was diagnosed in 2013 but I have had symptoms most of my life (I'm 25) my ANA was negative for a long time and when I started having more intense symptoms, they checked my ANA again and it was greater than 1:2560. Now it fluctuates between negivive and positive somewhere around 300.
Hello, I'm a 59 y.o. male diagnosed with type 2 diabetes three years ago. So I lost weight and changed my diet and also am wheat free. Because of my plummeting blood platelet numbers I was tested for Lupus. Results were positive. I have no other outward symptoms. The platelet numbers were so low I was told I'd need a blood transfusion first if I were to ever need surgery. Recently I cut my hand by accident and I couldn't stop bleeding. Not serious enough to go to hospital, but it took nearly two days for the bleeding to stop. The blood was a lighter shade of red and looked thinned out. So now I'm cautious for anything that could injure me because things could get bad quickly. By the way, I like your videos as you are doing a great thing for others who also have Lupus.
I had an increased sed rate 20 years ago and they found lupus antibodies and Collagenous Colitis. I’ve had several other illnesses. My sed rates have been normal with no lupus antibodies , but I have all the symptoms and it’s extensive damage to my lungs . They found inflammatory cells in my stool. What do you think?
I got a positive ANA And got a high anti-smith I got recommended to go see a rheumatologist My symptoms are Hair loss Headaches and that’s it I really don’t think I have it
15 years now iv been battling drs. 6 years ago my dr ( specialist) said might be lupus. Im getting worse now and have a list of shit a mile long and stuff still happening that dont add up!! Last week he said im sure now its lupus its time for you to do the last couple tests. Heres your papers go get blood work ill see you in 2 is Months!! Uuuugggg at this point im praying its positive at least that's an answer and some kind of treatment/help!!
I have many symptoms but I have always explained them away for another cause but I’ve had a low grade fever,fatigue and joint swelling and pain along with blood in my urine at my last dr appointment,so my sister who has lupus for many years said I should get tested.She had 2 unnecessary surgeries and multiple misdiagnosis before being properly diagnosed so I’m concerned
I've had itp when I was 9 until I was around 11 and then at 13 I was "diagnosed" with JIA...and was dealing with that diagnosis until recently. I always had a low blood count, I'm absolute anemic, and positive ANA. along with positive double strand DNA. I was officially diagnosed with lupus 2 weeks before my high school graduation.
I was diagnosed with ITP at 20yrs old and I had it about 3yrs, I got a blood transfusion from it. At 26yrs old I had 2 blood clots they never found the underlying cause. 3yrs ago they thought I had lymphnode cancer and it came back negative and today they think I have lupus bcuz once again I had 3 more blood clots that developed.
I’ve wondered so many times about a connection between Subacute cutaneous Lupus, full on SLE and multiple Sclerosis. I’ve been diagnosed with with the cutaneous version that hasn’t flared in years and MS. Lots of questions, very few answers, especially from VA doctors.
Hey Krystle! I have heard of that. I believe my platelets have fluctuated throughout the years. Lupus can also be known to I guess "eat" your platelets so I think that may be one of the reasons why they look at this for dx.
After taking Lipitor I was diagnosed, it appears that the older I get the worse I feel. I've had several test and many diagnosis, I was questioning the medication , foods and environment but got no results from my practitioner and at this point I'm on my own trying to do a diet change, meditation and exercise.
Hi there! I've been watching Lupus Stories since I got home from the doctor today. He suspects Lupus and/or RA.... or possibly MS. So.. I guess today begins my story. I am a cancer survivor, so I have tons of scans and a well documented history to help me out in the diagnosis process. They took all kinds of blood today. I'm going back tomorrow to give urine (performance issues ;)). Thanks for posting helpful information!
@@HealWithSamantha You know what is so striking to me? How LITTLE I know about this disease!!! Especially after reading medical journals and watching med school lectures and discovering how many lives have been touched... specifically, women. I am blown away at how little I know going into this. Also, I can't speak for all cancer survivors, because as you know everyone's experience is different. However, I can speak for myself when I say that the symptoms I have been experiencing have been as painful and sometimes more debilitating than my cancer ever was. This makes it even more difficult to wrap my head around the fact that I know so little about this/these diseases. I applaud you for making videos!!! Thanks again!!!
Gingersnap Jeep Girl thank you for sharing and yes, it really is scary how many people know so little about lupus and other diseases similar. You’ve had two tough worlds collide. I commend you. You’ll get through this fight too.
I had only ANA positive testing that came 1:320. After 2.5 years with variety of symptoms.It's very high, but I didn't make any further testing, as I broked my spine and had to recover for 6months :) Will do it soon. My symptoms are really bad panic attacks and in the same time recently low blood pressure, skin issues, eyebrows hair loss, fatigue, sudden change in the mood, headache (very strong) and so on.
Doctors tested me for lupus nearly 10 years ago as I have quite a few of the symptoms as well as family member with lupus but my ANA was negative they now want to re test for it after an eye problem has anyone ever had a neg ANA n then later in life a positive one ? Xx
My diagnosis took over 16 years. Have had problems since childhood like anemia, always ill etc. First time I had photosensitivity was at 18 or 19 years, seems I had Mono right before that so that may have triggered something. Had a huge rash, lost a lot of weight and was so very ill I could hardly walk, they did find some bloodwork different from normal but never told me what. Got a little better but problems never went away completely. Took another 16 years before they found enough symptoms to get the diagnosis. Did have B12 deficiency before, think at age 26-27 but seems I had that from small child as well, so that could explain the problems in my childhood and why it was so difficult to get a diagnosis. As if 2 auto-immune diseases was not enough, at age 39 Hashimoto popped up as well and at 41 Rosacea, now at 43 seems I have Psoriasis as well. Sometime I wonder what is next... Once you have an auto-immune disease you are prone to get more, Pernicious Anemia (B12) and Hashimoto love to come together with Lupus or so I am told :/
I’m in the process of getting SOME kind of diagnosis. My Internist is kinda at a loss. I have many of the symptoms of Lupus and she thinks it might be. I don’t have the butterfly rash though. Back in late December/ January I started to lose my hair DURING iron infusions (not while i was anemic but actually during the weeks I was getting the iron). I was diagnosed official 3 weeks ago with Alopecia. I’m now bald. My joints are ALWAYS hurting to the point where I can’t hold a cup or walk at times. Back in November my inflammatory markers in blood were “normal” (before the Alopecia started...another autoimmune disease). My CBC’s have dropped and are just barely at the low range of normal and my iron has dropped 40 points in 3 weeks. 🙄 I just had more blood drawn to check the markers again. I have IBS and my Internist who is a saint, is sending me to a rheumatologist. Hopefully that won’t take long to get in. I certainly don’t want Lupus and at the same time, I just want someone to tell me what’s wrong with me. I’m exhausted 24/7 (this from a chronic insomniac who now sleeps 80% of the time). The Internist just prescribed Celexa for the pain but the pharmacist said it’s for depression so now I’m totally confused as I’m already ON an SSRI. Does anyone have experience with Celexa for the joint pain? Does it help? Does it cause weight gain as I refuse to gain weight! I’m at a loss as my doctor thinks there’s a good chance I have Lupus and it’s just not showing up in the blood fully yet. Any suggestions or thoughts or words of wisdom would be greatly appreciated. My massage therapist suggested CBD dominant oil (so none of the psyco parts of the plant in the oil. Just the inflammatory properties) as it’s now legal here in Canada and I can actually buy it through the Gov’t website for my province. Thoughts? Words of wisdom? Ideas? Experience with Celexa? Thanks to all who may reply!
I have many symptoms of lupus but unfortunately I haven't been diagnosed just yet. They've diagnosed me with kidney disease, epilepsy, protein c deficiency, colitis, Gerd, crohns disease, peripheral neuropathy, and lots of my family has lupus but they are having a problem diagnosing me. My platelets and rbc are always low. There's been a few times my Sed rate was high. It's so hard when you don't have insurance and you are using rent a doctors. You look amazing and I love your positive attitude. What symptoms did you have that pushed you to get checked?
I was diagnosed with ITP low platelets before I found out it was lupus causing the low platelets. It took 3 years to find out. One day I was sitting outside in the sun watching videos on my phone and my veins on my leg were coming to the surface and my leg was in great pain. Then it felt like I had a cold. My PC thought my platelet count was dropping again and told me to go to the ER. The ER did nothing for me besides give me an IV. They could not figure out whats wrong. My PC has me take another blood test and everything came back fine except for my platelets which I knew about already and ANA. I have burning sensations,blood in my urine, butterfly rash, spider veins, swelling in joints, toes, and fingers.Sunlight kills me and makes my pain a 10plus. Ive been in pain everyday for over a month and really miss my old life. It sucks knowing that this is my life from now on. I'm also worried about not being able to carry because I really want kids. I've been crying daily about this.
Hi Sam .. my name is katie and im 38 ..Im so sorry you have to deal with a chronic disease like lupus and the many other autoimmune diseases you are also living with,it must be so scary not knowing whats around the corner and what symptoms you are going to have to endure on a daily basis,but i thankyou for sharing your story xx I have been having chronic symptoms consisting of itchy rashes on my face and neck due to food sensitivities, sore muscles,iron deficiency,ibs,gerd and tiredness ....I was referred to a specialist by my doctor...I am currently doing 24 hour urine tests...My Ana titre was 1.320...and my nan has lupus...I'm a little scared...any advice you could give me would be much appreciated...xx
All my lupus blood tests were negatives except for the antismith antibodies borderline So I had to do a biopsy which showed I have 15% lupus in my kidney
Hind Yehia hey omg I have the same exact issue. I had my ANA tested, came out positive but all other antibodies were negative EXCEPT Anti-Sm antibody - normal range is 0-0.9 but mine was 1.3 (mildly positive as my rheumatologist says) so same boat as you. Any updates on your situation? The doctor is monitoring me now
Three times tested ANA always positive and Doctor says no even through dry mouth, dry eyes, Breathing, legs swollen for the past year. Last three months on prednisone, low immunity,fatigue Gout, is so bad, yes I am a 65 year old man
Thank you so much for sharing this video with us all I have rhuematoid arthritis since 5 years now and because of that almost all my joints are affected especially my jaw joints it is hard for me to chew my food and it is difficult to open and close my mouth too.
I just got tested. I'm sure the VA will screw it up, welcome to "can I pay you to not treat me?"The regular hospitals misuse my insurance a lot and thus confuse my diagnosis, but there's a higher chance of survival. I became very ill while I was with my grandma at the lake but hid it. I've had the rash on and off since 16. I used to blush easily and had rosy cheeks when I was younger, so. I had them do blood tests today, and I was borderline anemic last time they checked and growing up, too, but I have been anemic and/or malnourished before. I wonder about my nutrient absorption at times. I want to eat constantly. I grew to be several inches taller than they thought I would. I was in Germany in 1986 in my mother and then born. I don't know if you have "Raynauds" or anything else. I also have psychological problems when I'm cold for too long. It will get to the point where I cannot warm myself up. I take showers in the winter. It is not as bad as when I was a teenager because I have a good coat now and other things, and I'm not out for hours upon hours. My mother had arthritis in her 20s...She has a weak body naturally while I do not. I used to be way stronger than both of my parents. But I was sick for years of my childhood and developed schizophrenia around 8, like full-blown. I've had a lot of physical, social, and economic trauma. I've had a murmur and a lot of other things. Head injuries. I laugh, those of us bound by mortal chains. A lot of people do not understand this. You're so tough, right. Good luck. I've been put into homes due to my schizophrenia, but um, I wish they had nice ones :(. I have issues being by myself and on my errands. Wah, wah, I know. I'm also diabetic.
Hey :) Thank you for your video. I have a few questions that I would love answered. I have been battling with sickness for a very long time, almost all my life. Some of my physical symptoms woudl become so intense that i would miss work and it even cost me my job twice. The doctors are considering lupus, now. I have a lot of the symptoms. I just got 10 tubes of blood, urine, stool sample very recently. Im tired of being so sick all the time and missing work. Literally the fatigue, unexplained fevers, dry eyes/mouth, headaches, exhaustion/pain when in sunlight (which is a lot because i dont drive - i take the public buses), joint pain, excessive hair loss, frequent infections, etc. have been screwing up my life. I feel so so SO sick all the time. And im missing enough work that i cant pay my bills now. I am tired of feeling sick and scared to death of them still not knowing what is wrong so that i can get proper treatment. I dont know what my ANA results or red blood cell results are yet, this was just done a few days ago. I havent seen a Rheumatologist yet, i have been referred and trying to get set up, but all the labwork is being sent straight to whomever i see. I do know that my complete blood count came out normal about a month ago when i had labs done in the ER. According to them i do not have anemia or low white blood cell count. I was just wondering if it is possible to have Lupus if this is the case? I have all but two of the Lupus Symptoms on the Lupus website, and all but two from Mayoclinic's symptom list at well. I am so so SO frightened of still not having answers (and therefore treatment). Literally, I am 23 and have missed so much school, work, church, and life because of being so sick like this off and on. I need answers, and when you said about the anemia and white blood cells it frightened me a bit because i am afraid it means i likely dont have it and therefore still dont know what is wrong. Any ideas? And if you do have any ideas pertaining to this, do you think this would make it take longer to get a diagnosis? Six years sounds so terribly scary. Especially when you have no family support and you are about to lose your apartment...
Jesusfreakmusicgeek hi! I had a positive ANA test while all my other test were negative and am currently being treated for Lupus based on the ANA and meeting some of the criteria, so yes you can still get a diagnosis. Good luck
Oh gosh... My ANA was positive.... Twice. I went to get checked for RA, and it came back negative. Doctor said tests were all negative in 2016. Went back this year in 2019, and guess what, come to find out my tests were not all negative. ANA positive twice and scl-70 jumped from 1.9 to 2.7🤦🏾♀️. I feel so lost trying to figure it all out. I have some symptoms of lupus and mixed connective tissue dieases. Now I'm just waiting to see the Rheumatologist.
Hi, do you have an update. I’m Searching through comments trying to see someone say something like this. My scl-70 was 6.3 in 2018 and I’m just now seeing those results ! I’m a bit terrified. Would love feedback
Hi...yes I do...my scl-70 titer was really low according to my dr. He told me not to worry about it and get on with my life.Unfortunately I couldn’t see him again for a follow up bc he passed away before my June appointment. I’m glad I did fight to see someone bc it put me and my family at ease. I’m doing fine and planning on extending my family really soon. Stay on them and be an advocate for your health if you’re not feeling what their saying to you. Take care❤️❤️
Holy crap, I have 8 out of the 11 symptoms. I am yet to be dignosed. I first got sick at 14 with blisters from the sun all over. I have a neurologist appointment in august. Hoping for a dignose. I am 43. I have uncontrollable seizures but no one has been able to tell me why.
Been diagnosed with Sjogrens due to ana being high and specific antibodies... but after a few year my doctor has started testing me for lupus. Still waiting on bloodwork... hoping to get some answers soon.
I was diagnosed in 1994... After 2 yrs of frustration... Probably a year before that i started loosing weight and very Lethargic. But kept being told there was nothing showing.. I was down to 105lbs. Everytime i went in with a new symptom the office staff gave me the feeling of ( oh shit this woman is back again )
When the doctor gave me the diagnosis he basically told me to prepare for my death.
I had 2 open heart surgeries since being diagnosed .. And i actually died after the 1st one. ( Medical records show i was gone 26min )
They told my family i would be nothing more than i was in the hospital bed at that time.. But i had Angel's watching over me.
I chose to fight like hell.. My Children were my strength.
Hugs to other Lupies
Jean Hopkins oh my word that is crazy! I’m glad you are alive and well now! I’ll be praying for you, your health, and your family. Stay strong!!❤️
You can fight with this sickness.. I also have lupus but my family is so poor and we can't afford to buy medicine..
My ANA was high. CRP high. I have most of the criteria My skin is awful. Butterfly rash always. Lupus is brutal. Bless you all.
I had symptoms since childhood. That was a long time ago as I am 53. I was dx 2010. When I finally could not function anymore bc of fatigue and pain, I gave in and went to a rheumatologist. They took one look at my tests and me and knew it was lupus.
Lupus has cost me my career, hobbies, and a lot more. I struggle with depression and anxiety. I went from an active life to pretty much homebound.
Keep pushing through. 😊
Lupus is exactly that. It is crazy they let you go that long without a diagnosis but unfortunately this isn't uncommon.
Ana high seed rate high I’m speckled
I've been misdiagnosed since 2010, and was just properly diagnosed last week. it got to the point I was in a wheelchair for two years. I love your channel, and look forward to videos to come!!
jason david did ypu had butterfly rash?
jason david Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities.
Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back and I'll send further details. Thank you!
Winner of a video, been searching for "medications used treat lupus" for a while now, and I think this has helped. You ever tried - Denmelia Jansabella Builder - (search on google )?
It is a good one off product for discovering how to treat lupus minus the hard work. Ive heard some unbelievable things about it and my brother in law got amazing success with it.
I'm still going through getting a diagnosis but it has been so painful trying to get doctors to listen 🤦🏼♀️
When I was 17 I kept going back and forth to the doctors telling them i knew there was something wrong and they kept telling me I was a hyperchondriact and sent me home with antibiotics 6 times.
Turns out it was cancer.
I love you hear other peoples stories 🖤 it makes me feel not so alone.
Youre doing an awesome job girl 🖤 youre amazing x
I was given those three diagnosies originally as well! Started having symptoms in my late teens. I was finally diagnosed with Lupus at 31.
I have had some weird skin problems on my face so I went and saw the doctor and I guess she thinks it looks like the butterfly thing. So she immediately wanted to get a blood test and this was yesterday. Now I find out that the results look like it could be an autoimmune disorder. Man, this all makes so much sense. I have so many symptoms that I've had for years and I'm thinking I might have lupus. This is blowing my mind right now. I've had so many problems and finally it sounds like we have an answer. I'm shook.
same here. ! be strong!
My first signs I wad 14. I am 36 now and was just diagnosed this year. At my annual yearly for over a decade I reported fatigue muscle and joint pain with random sharp chest pain. Tests came back and constantly told me nothing was wrong. 2 years ago I got a new dr who never gave up. Its all about the dr you choose.
Same story. Joint pain for years and now butterfly rashes. Ana came back negative so my doctor gave up. Going to see another one on Wednesday. Hope they try more tests
It took 6 years for a diagnosis of lupus and all the others...many docs...they just never run labs..until one doc first thing out of her mouth was sounds like you could have an autoimmune disease..well I had 5..and I think lupus has attacked pretty much every organ now after almost 9 yrs after diagnosis. I think I'm up to 18illnesses now..hugs💜
Shena Dawn Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities.
Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back and I'll send further details. Thank you!
Shena Dawn I’ll be praying for you. Stay strong!!!❤️❤️
Shena - can I ask which autominnue stuff do you have? I have 7 and am being tested for Lupus now.
I would loive to know as well if you dont mind.
I am 55 years old and was diagnosed 9 months ago. Last summer I had some severe back issues which a pain specialist finally got under control. When I went to my regular oncology appointment he was concerned about the back and started asking me a lot of questions. He finally said he thought I had an autoimmune disease and wanted my primary to run an ANA panel. My primary did and it came back positive in several areas. She sent me to a rheumatologist and he redid the blood work and took lots of x-rays and confirmed I had lupus. In looking back I have probably had it for 15 to 20 years and did not know it (that is when the nose sores started, I had mouth sores about 5 years prior to that). He put me on plaquenil and just last week added cellcept. My body is in attack mode at the moment.
I am 16 , having Lupes is very hard .. praying for everyone.
Not had a diagnosis but have had rashes, joint pain (moving to various places), morning stiffness, fatigue, irregular heartbeat,light sensitivity and dull headache for over four years. It’s good to know that others have gone through the same miss diagnosis route, it’s so frustrating to not know what’s going on.
I was recently tested ANA was negative but my blood inflammation was over the top, also recently diagnosed with MS.
Sonja Chancellor I have the same issues. My CRP and sed rate were really high but my past Ana always comes up negative. I have 90% of the symptoms listed for lupus. I’ve been trying to figure all this out for 6 years. I’ve seen 3 different PCPs and one Rheumatologist who are all confident it’s lupus but can’t prove it with my ANA tests.
@@melissalamb2534 Did you have the Avise test?
@@melissalamb2534 i have almost all the symptoms and in fact almost went into cardiac arrest last week when my new imitrex prescription constricted blood vessels in body and made my heartbeat irregular and horrible chest pain and jaw pain. I thought I was dying. but i've taken ANA test twice so far. Once almost two years ago and once about 8 months ago. Negative both times. All autoimmune panel is negative EXCEPT TPA which is soaring high off the chart. That's for my Hashimotos Thyroiditis. Now have a tumor on thyroid....crazy. dr believes i have lupus but early stages. Malar rash, swollent joints, hair loss, mouth and nose ulcers, kidney issues, lung and heart issues, massive migraines. Not sure why Ana is negative twice.
Ohhh my gosh! The 3 things you said you were possibly diagnosed with in the beginning I was also 3 weeks ago. I was then given a blood test that was positive with ana & sent to a Rheumatologist. Today... my Rheumatologist had my get a 12 panel blood test to find out exactly which ana I have. I've been dealing with many skin, brain, heart issues since 2013, but not at the same time. It's been very frustrating not knowing what's wrong. I finally had enough when 3 weeks ago all my joints were stiff, red, and inflamed, so I took off work and that's where my Lupus journey began with DEMANDING an answer! We'll see next week what the tests say. Thank you for your story as is helped with mine❤
@Candy C doctors words "I don't want to diagnose you, cuz then I have to treat you." All 11 came back normal or ok ranges. However, she gave me Plaquenil to see if any changes & kept me on low dose steroids. Not much change except pain & whaaat looks like psoriasis is going away. I see her again in another month. I'll update then:)
@Candy C thanks, i'm for sure trying. To make matters worse, I lost my insurance this week, so don't know what on gonna do at this point! Thanks & I'll keep in touch of what going on from time to time 💖
7 years of being diagnosed with arthritis, and I finally got the lupus/mctd diagnosis. I said from the start that's what I thought it was. But my last med change resulted in neuro problems, massive DLE skin flare up and changes in my blood work. I'm also being tested for MS. My mom said I've probably had it my whole life (I'm 35) but doctors didn't take her seriously and said it was growing pains and eczema. I live in Canada if that matters.
I had my first pulmonary embolism when I was 19, and they chocked it up to birth control. Later they diagnosed me with 2 blood clotting disorders. I had clots during pregnancy 6 years later, and again bilateral pulmonary embolism last year. FINALLY, after losing so much hair, swelling to the point my skin was hot and tight, having rash on my arms on and off for years, pleurisy, fatigue and this constant pain I've become so used to I just assumed everyone felt like this, i was diagnosed in April 2017. I got a new doctor when I changed insurance and I went to her to see if she'd give me blood thinners and medicine for the nose ulcers. She just happened to be a rheumi too 😊 It's almost a relief. I don't feel so guilty about being so tired all the time.
It took about 2 years for me to be officially diagnosed. I had normal bloodwork taken for a check up and my liver enzymes where high and that's when all the testing started. First I had a rash that was biopsied and tested positive for SCLE and then I got the positive ANA. Along with joint pain and fatigue, it all added up. I think I've dealt with the fatigue and joint pain for years beforehand and I was so used to it, I just thought it was normal. It's been a strange journey but it's great to see someone like you making these kinds of videos! No one my age (I'm 22) knows or understands what it's like.
God bless you Hon for this video. I have been not well for a few years. Dismissing much as just weak immune system. In this past year I really lost ground. When I started losing my hair and noticed blisters cropping up on my scalp and body from sunlight, and even florescent lighting @ church & in stores. Not to mention the extreme exhaustion, pain and many other symptoms. I saw my primary who referred me to Dermatologist. I am definitely a classic lupus patient. It would be very hard to actually pinpoint exactly when this began as I have suffered many afflictions for so long. After the passing of my twin brother in 2018 I believe it came full circle. We really have to be aware of our health. Doctors need our help in diagnosing. I pray research will find the cure. You are so young. Having a god support group is essential indeed. My prayers go with you and all who suffer these dreaded diseases! God bless you for all your help. You are making a difference!
I have just been diagnosed with lupus. I’m 60 and also suffer from severe Copd. I have now been retired from work due to my ill health. I was really bad with skin rashes all over my face arms and scalp. That was over 12 years ago. I have to admit it’s not as bad now as it was then. My hair fell out and found it difficult to go to work. I was employed as a janitor and some of the looks I got from the kids made me feel very low. The medication for lupus is interfering with my copd and arthritis. At present I’m on high dosage of steroids which I find helps my arthritis but they are messing up any antibiotics I require weekly for my copd. Difficult to work out what is worse.
Thanks for the video it helps to know I’m not the only one as it’s more rare for me being male
showed symptoms since I was 8. wasn't diagnosed until I was 20. my hair was toast by then.
Did your hair recover at all?
@@MalikaSharmaNZ a lot of areas on my scalp are covered in scar tissue so unfortunately no, I just wear wigs.
I have only tested ANA positive 2 times in 25 years. SED rate varies high low. It's taken almost 10 years. It was actually my dermatologist who got frustrated and started ordering a lot of extensive testing and biopsies of my lesions and made the diagnosis of SLE forcing my rheumatologist to start actively treating me. I had complained to him for years about joint pain and swelling, extreme fatigue, mouth sores, hair loss, I could go on. He diagnosed me with fibromyalgia and stopped exploring anything else. Thank god for my dermo. She says I'm sero negative SLE anyone else with this diagnosis?
THANK YOU ! so much for your comment. I can't tell you how much this has helped me...I tested negative on ANA initially, now they're finally running a lupus panel. I have like, eight of the eleven symptoms for almost three years. No one, including me, could put 2 and 2 together. I mean, who goes in and says, well, I'm exhausted, plus I have a sore in my nose, and I can't stand being in the sun. I sure didn't I just thought 'well, I'm really weird, AND really sick'.
Just starting down the path... 58 year old guy. Positive ANA, speckled, 640 titer. Low platelets and whites. Butterfly comes and goes, LOTS of joint and muscle pain. I also have the cognitive dysfunction, which for me is mostly getting words out and short term memory.
Two problems: I have CVID, which means I no longer manufacture my own IgG, and many of the markers for lupus are on the IgG antibody. I pump in known good IgG as replacement therapy so the test of those markers always looks like I'm perfectly healthy. One Rheumatology practice wouldn't even see me because of the CVID complication. Second - The first available appointment for the practice that will take me is three months out.
In the mean time, I'm learning all I can about what I might have. Your video has been a rely big help. Thanks!!
I've had symptoms for some time now my dad and my brother both have been diagnosed with Lupus anticoagulant and are both on Lovenox shots. This particular strand of lupus requires a Russell's Viper Venom test. I cannot afford the test at this time, I am going to a free clinic but it has been about 3 months since they tried to get the test for me. I have episodes of shortness of breath dizziness, bulging veins, suddenly in my left leg and chest pains, arthritis in the mornings and fatigue and going home early from work occasionally due to these health issues. I also have a butterfly rash on my face oh, I have had two heart attacks and I don't smoke I drink occasionally. God bless you and thanks for your video
It took me 5 to 6 years to get an official lupus diagnosis. The whole diagnosis process started in 2002 but I was definitely having symptoms for at least 4 years plus before that. I don't know what my anti DNA was when I was first diagnosed but it's always positive on my lab work even if things are otherwise under control.
I'm 20 and I have had symptoms for at least 3 years, was misdiagnosed/treated for Lyme because my ANA was negative after going to the doctor with a discoid rash on all my joints. Within the past few months, my symptoms got more severe and I got an appointment with a rheumatologist who immediately suspected lupus despite another negative ANA. As of now, I am on Plaquenil without an official lupus diagnosis to see if it works. I've only been on it for 2 months so we are still waiting to see if anything improves. Other than the one possible discoid rash 3 years ago, none of my symptoms are necessarily unique to lupus which is why my rheumatologist is reluctant to make a formal diagnosis, but I'm just thankful that she was down to try plaquenil so maybe ill have answers sooner than just waiting for a positive ANA.
I'm a guy and in the process of figuring out what is 'wrong'.
I have the butterfly rash and my left knee can get pretty swollen at times, which is how all of this got started for me.
I'm taking the diet route (plant-based, low fat) and since then my knee has healed quite a lot. And my blood tests were good according to my rheumatologist.
I took the ANA test and tested positive the first time and negative the 2nd time.
My blood platelets + vitamin D levels are low though. I suffer from quite a lot of fatigue which I didn't hear mentioned in this video.
Who else is doing the vegan thing here? :)
Cheers for the video, great initiative.
So ANA gets negative and ur not a lupus?..do u do a dsDNA test?..My ANA was postive...had rush...fatigue...but my dsDNA came negative...My blood count is normal..is it a false positive then ur ANA?
My daughter's first ANA came back negative, but she still had symptoms of Lupus. They did the test again, and it came back positive. She was diagnosed with Lupus within a few months. I personally asked them if this could be Lupus because she had so many of the symptoms, but I knew it could take years to diagnose. They told me her symptoms came on so strong and sometimes children/young adults can be diagnosed easier because they have stronger symptoms than adults. She was diagnosed at Stanford Children's Hospital. She had a fever, sores on her legs, her whole body was full of water, she was anemic, fatigued, shortness of breath because the water was surrounding her heart and lungs. She also had joint stiffness with pain. They did all the necessary tests, including a kidney biopsy, and determined it was Lupus. We have not seen any sign of the butterfly rash, hair loss, or mouth or nose sores.
sacgirl44 I am sorry to hear about your daughters diagnosis. I was a pediatric patient when I was diagnosed and it all happened very fast as well. Wishing you all the best. The beginning years are tough but eventually she will begin to learn how to listen to her body. I hope the initial treatments help her too.
My husband’s ANA has always been normal but his kidney biopsy was used to diagnose SLE.
I was diagnosed a while ago. I was living with unbearable pain, headaches and I was losing weight. My ANA was high and my tests came back flashing red lights. I had tons of blood tests and was diagnosed with rheumatoid arthritis first. My skin didn't have the butterfly rash so people decided I just had arthritis and wasn't getting sleep. My urinalysis took a long time to do. I'm sensitive to the sun, and I have to be careful not to get sick. I also have anemia. It turns out a miracle medication I was supposed to take could cause macular degeneration-good thing they caught that.
I'm in the process of possible diagnosis right now. I just did blood testing and the urinalysis test and waiting on results now. I've already been tested for arthritis and gout but my doctor is now testing for lupus, acute gout, or, through the process of elimination, chronic fatigue syndrome. Its been only a year since I started having notable symptoms.
hi. could you make a video related to what to eat n to avoid.what happens to our body when we eat what we arent suppose to eat. or a diet for lupus. that will be very helpful for me
Hello! This is definitely a topic I want to talk about. Hopefully I can get this one going soon.
LiveHopeLupus thanks. because i know that we arent supposed to eat lentils but in my case i hadnt seen rashes or something yet as when i eat any other bean.
I'm not a doctor . Try googling "Keto Diet"
I have noticed that lessing my intake of meats and sugars. Eating as many vegetables as possible is always great
I started getting symptoms when I was 17. One Dr told me I had lupus, and one told me I didn't. I always knew I did because I was getting pretty much all the symptoms. But they didn't tell me I for sure have lupus until I was 29 or 30
ANA 2,045
Once it became obvious something was seriously wrong with me diagnosis only took six weeks, or so. 9-11-15 was the day! Before 2015, my symptoms were fleeting and hard to nail down.
It's my belief I've had some sort of autoimmune activity going on most of my life. I can remember seeing livedo reticularis on my skin when I was in Kindergarten. Weird skin rashes would come and go in my twenties. I have a photo of me with a butterfly rash in 2001. Lots of instances of weird joint issues... The list goes on.
Thank God for Prednisone and Benlysta!
My ANA was in a similar range. I want to say around 1800. Like you, mine went rather quick too! Glad the Benlysta seems to be helping you. I'm hoping to get back on it in the next few years.
Jonathan Rice
Do you mind sharing the picture of the rash you had? The images I can find on the Internet are all severe cases.
@@MichaelSmith-gd4gv yes, i was wondering about that, too. i'm very fair, and mine just looked like a little redness from the sun.
Also my symptoms started years ago but were so vague til nobody really knew what was going on. I have no insurance so I had to pay for my tests . I used my stimulus check for the more expensive ones. Maybe that was bad but my health is more important to me so that I can hopefully get healed and live a better life in society
Thanks for your wonderful video. My daughter just got diagnosis lupus recently. She's just 22. She is in college .I am more worry about life after lupus is anything you can share with us. After lupus, you can go to work, go to school, get married, have a normal life as Normal people. ???Thanks.!
It's so sad that I have most of these symptoms also pain is horrible:( I'm in the proses of getting a diagnosis😖 I've been in pain for over a year!:(
You are doing so well Sam keep it up❤️
ive been suffering almost 6 years now and had to live several years suffering not having insurance. After i had insurance i was nearly suicidal, still am probably more than ever, but doctors thought maybe MS they didnt see the markers they wanted there and as Ive started developing some new symptoms I put them together with very old symptoms and Im thinking lupus may be the answer to my mystery illness but I cannot wait another 6 years to be diagnosed, I am 37 a mom of 3 happily married but I will take my life before I go another year suffering this way in front of my family and them having to take care of me. I feel like my kids and my husband deserve a healthy mom, the old me. It has stolen my energy Ive gained a 100 pounds, my hair has been steadily falling out daily for 5 years to thin barely there, it stole my career I worked in pediatric dentistry but my pain, short term memory loss, and uncontrollable small motor skills as well as sitting in an operatory for hours stole all my hard work and love for my profession. It stole my favorite thing to do, the beach, travel, playing with my kids, being able to make appointments or even have the energy to shower everyday. Im at a loss, hot tubs, out of the question, hot showers my skin will burn like pin pricks and come out with red splotchy arms. I can't take it anymore, Ive been hospitalized, thrown up uncontrollably, got horrific anxiety attacks for no reason, horrific insomnia, hop pain that would kill a person, fluid build up in feet, ankles for no reason, painful feet, my left ankle will feel like it needs to pip then proceed to hurt like I broke it for days. Hip pops in and out. Wth is happening to me? Who can diagnose me, Im starting to feel theres only one way out of this torture.
J Mac stay strong!! You need to continue fighting through this. I know it’s hard as heck but you are loved and needed by your family!!!! I’ll be praying for you!❤️❤️❤️
Claudia A thank you, its worse than ever though. Im trying but even with my insurance it was 350$ up front to see a rheumatologist so I had to leave. Im at the end of what I can take.
ANA 3 Years Ago Postive For Lupus, Sjogrens Syndrome , Dry Eyes, Butterfly Rash, Swelling Joint Pain, And Stiffness..I Try To Eat Right And Exercise.☺
I have had multiple neg ana then i had a low positive with a low positive anti-dna back to neg ana i have low iron for over 8 months
I’ve been having symptoms since I was 16 and didn’t get diagnosed till I was 38 ! Crazy I know !!!! It wasn’t till my blood test for the white blood count came bk very low , they referred me to hematology then they did more blood work there and my ANA came bk positive (1:160) then they referred me to Rheumotology and that’s wn all my blood work and symptoms screamed lupus to them .
Hi, what symptoms did you have?
49yo, diag. 10 years, ago...had it in mid to late 20's . Killed my photography career
Really scared. First seizure last week...
10% guys get it(win),3-6% get the aggressive strain(win), dad, married 25 years next year with three girls and now I'm "handicapped" and it scary.... .....😓
Hi, I was diagnosed with lupus a couple of days ago. I'm totally new to this disease. I first started out with a rash, it was all over my arms, my stomach, and my thighs. I immediately went to the doctor thinking I was having an allergic reaction or something. I'm glad my doctor decided to check me for it, it was 100% lupus, no allergies. I also suffer from type one diabetes and hyperthyroidism as well...
We get a crash course in blood work my cardiac dr looked at my blood work and was like I don’t understand this
i’m 14 years old, and i just got diagnosed with lupus yesterday. the only symptoms that i have were a very low white blood cell count,fevers every day, shortness of breath, and extreme fatigue. i’ve been sick for a little under a year, and at first they thought i had lymphoma for a few months (cancer) i have 3 very swollen lymph nodes and that was really concerning to them. i’ve been seeing a rheumatologist and she finally diagnosed me :)
I had joint pain in my hands and feet. Doc said that's abnormal and did full blood count and ANA test. My ANA Test came back positive 1:160 with the Homogeneous pattern.... I got referred to a Rheumatologist and just by looking at my blood work she said the likely diagnosis is SLE and after an hour of consulting she officially diagnosed me with SLE. It took 3 weeks to get a diagnoses. I don't have the skin symptoms at all tough.
hi! im glad you got your diagnosis so quick! i also just got my diagnosis and it was also within a matter of weeks and i was just wondering if other than the ANA you had any other abnormal blood results? My doctor diagnosed me based on my clinical symptoms and positive ANA and im not too sure since my other blood work like complement levels, WBC, RBC, SED rate and all that is normal. i hope youre able to explain so i can understand a little better!
@aimenkhattak4943 Hello! I was just told by my neurologist that my ANA antibodies are positive with Homeogeneous Pattern 1:320. A lot of my blood protein levels ( Beta Golbulin, Globuin and Total protein)are flagged as high with C3 serum flagged as high also. I have a lot of symptoms like hair thinning and balding, joint pain, stiff joints with cramps, muscle weakness in arms and legs, itching with no rash, electric shock down my neck when I move my neck, cog fog, cramps and spasms all over my body with tingling and twitching, tremors after I lift something, fatigue, body aches, burning sensations in my joints like they feel warm too the touch sometimes, clumsy by running into objects and walls, and last month I had some difficulty walking and with balance issues. Also I have my first psoriasis patch on my thigh. I told my neurologist that I believed my symptoms where related to Multiple Sclerosis but after my blood results she referred me to a Rheumatologist. I have an appointment with them on July 11 and I'm nervous because there is lupus in my family ( my aunt and her daughter my cousin on my mom's side have lupus). Is it possible to have more than one autoimmune condition or are my symptoms pointing toward Lupus? I've been doing research and a lot of symptoms overlap with different conditions like MS, fibro, Lupus ans RA.I just can't wait for my appointment 😔
I went to the RA doctor in December of 2015 for fibromyalgia and the doctor noticed the rash on my face, neck and arms. My next appointment in February of 2016 is when I was able to show him pictures of my rashes, fevers, mouth saws etc. today I still don't have a positive result of lupus but have all signs of lupus. I had my appointment with my RA doctor today and it didn't go so well. I have a lot of trouble walking lupus sucks. It does take a long time for positive results to come out but for lupus to destroy your body it happens really quick.
Doctors won't take me seriously.... 🙄
Vilou Creations don’t give up and find a doctor that takes you seriously and is compassionate to your health. 🙏🏼
keep on fighting for your health and find a GOOD doctor who'd listen!
some advice for you,follow goodbye lupus,
Vilou Creations trust I’m now diagnosed with SLE but it took me 4 years they even said is in my head lol so it will take long time and until your body is totally damaged before they say anything
Why do you think they can help you? They can’t.
Sense I was 16 I have been told I have fibromyalgia. May I turned 22 and the past few months I’ve had arthritis symptoms in almost every joint and major issues with being tired and weak and feeling ill. When it started they did all these tests in this video. They said I had a false positive for lupus. My ana was positive but when they did the blood count and swelling tests they didn’t show anything. Comes to find out there is people in my family that have lupus and it’s can be genetic or run in family’s. Sense those tests I’ve gotten worse. They put me on an arthritic medication. It works but I still feel it if I go outside. I have 6-11 symptoms of lupus. 3 weeks ago I had surgery for a migraine stimulator. I have a week left till I’m fully healed. I’m currently starting to have problems with my two favorite foods dairy and bread and I feel sick constantly. I still feel weak and tired and just not liking food when at this point I should be healthy and starting my work outs but I can’t do anything more then watch tv play video games and forcefully make myself cook food and drive. I’m kinda flipping out cause I wanna keep talking to my docs about this but there so busy and I have to wait 3 months to see them next but I need to go back to work
I'm currently 14, it took me about 1 year to get diagnosed, but I had been experiencing symptoms since age 11. Thankfully my case isn't very severe, currently and my main struggles are with RA, fatigue, rashes, and many infections. I'm very glad and thankful that I have a minor case. As of now, at least. Hopefully for a while, too.
I’m currently 14 and have been experiencing symptoms for one year. I have chronic pain and stiffness, fatigue, dizziness, pre syncope, high heart rate, high/low blood pressure, irregular hear beat, shortness of breath, chest pain, protein in urine, joint swelling and redness as of course the butterfly rash. I’m currently trying to be referred to a specialist. How are you doing now?
I do not have a positive ana, I did 6 yrs ago but not any longer, I have all the other positive markers for inflammation, c3 c4 complement, extremely high sed. Rate, decrease red and white blood cells, crp is high, I have Hypergammaglobulumia, I meet the criteria, Raynaud's ect, but because my ana isn't positive they would not diagnosis me well 4 days ago I was diagnosed without a positive ana, I was told not everyone has a positive ana, I have other autoimmune diseases and my ana has only been positive once, I'm just thankful to finally be able to have a little piece of my life back
hey I love your videos. I am newly diagnosed to lupus too im 23. it's good to see you post things about videos I am really interested in them :)
Now I'm 21 I was diagnosed when I was 18, but I had symptoms for 3 years. My ana was 1:200. By the way I'm from Lithuania.
My doctors think I have lupus but the problem is that it's hard to diagnose if ANA comes back normal or unsure and that was mine but I have a butterfly rash and very sick and it's hard to deal with without medication to help me. When I have flare ups it's awful. The reason they think it's lupus is because of my unexplained fevers and a bunch of other stuff but I just hope I get answers soon ( I'm 14 and this started when I was 6 but then it stopped and started really badly when I was 11 and we have been trying to figure it out since I was 11 when I got extremely sick ) school is a major problem for me tbh too. I hope you're feeling better ❤️❤️ also I have like 6 of the 11 criterias and it's just annoying I'm so over it going to get blood work every months it's so annoying.
It's a Kay thing it can also be Lyme disease.
I have the majority of these. I keep testing neg for ANA though.
My ANA was 1:1280. Speckled. A dermatologist sent me for the blood tests because of the malar rash that I had. I have every symptom. Ittook me almost 7 years to get diagnosed and I have had signs of this for many years since my teen years.
Going to rheumatologist for the first time monday, a couple months ago my PCP did bloodwork and my ANA levels came back at I think it was either 1,080 or 1,280 and that was finally enough for him to give me a referral to rheumatology. My guesses based on research I've done and symptoms I have are that I have hEDS or Lupus, but I could be completely wrong.
What was it ?
Just got my first sed rate and it’s 92, I have family history of lupus and rheumatoid arthritis
I was told in 2012 the I had an auto immune disease. It wasn't until 2016 that they actually gave me a definite answer.
I was diagnosed 2003 with SLE and it took a trip to the ER.For about a month or two I was losing weight rapidly, I had the mouth and nose ulcer and of course the famous butterfly rash. they did all those blood test you talked about and after a week I was diagnosed. Ever since, I've been taking Prednisone, Enalapril, plaquenil and benlysta infusion.
I meditate for you and love you all time. From Canada.
I have had symptoms since I was literally 5. The first 10 years of me complaining every doctor discarded basically every I was saying until I was about 13 but still no one had any idea what could be wrong with me (and neither did I). I turn 20 this September and I just got diagnosed. My general practitioner did some routine blood work because I was having extremely low B12 levels and decided to do an ANA test because she was suspicious of lupus and that is how they connected the dots. At minimum 6 years later...
Worried I could have this I've only had the raised sun burn rash twice but have hip pain and migraines constantly and have an esr steadily raising was referred to the rheumatologist yesterday.
I've had the butterfly rash for years and my doctor brushed it off as psoriasis and now that I work in a hospital I was told to get tested for lupus after they say other symptoms I showed. I was 12 when I started having symptoms I'm almost 20 now.
Thank you..
As you know you need to fight , and beyond what the doctors tell you. Do research. When i was diagnosed LUPUS was still very much not much knowledge of the disease .
I Love how you thought to do this series of video's.
Much Love to you
Try the Keto way of eating, all of my symptoms are gone while eating this way! I feel happy, free, and normal again 😁
I gave up going to the doctors for this. Years ago, maybe 5 to 6 years ago, I went to the hospital in pain. They didn't give me the Ana test. But they gave me the d-dimer test that came back positive. They ask me do lupus run in my family I said no because no one on my mother side have it and I'm not close with my father side so idk. I went to a rheumatologist that was out of network which I can't afford, she said I have arthritis from my x ray. Still didn't give me a blood test. I recently went to the hospital and the blood clot test (d dimer) came back positive again. These doctors in this small town seem to not know what they are doing.
Ladylocs Asia
Did you figure it out?
Omg ! Did they put you on a blood thinner ? I had clots while pregnant, they definitely should do a coagulation test & you on a therapeutic dose !! Prayers
I'm 36, I haven't started testing yet but I'm almost certain thats what is going on based on symptoms I've had my whole life but the butterfly rash didn't really start until about 7 years ago plus, I have an aunt and cousin that have it.
I've been struggling my whole life. I am meeting with a doctor soon to hopefully get tested for lupus. If I have it then I was born with it because it would explain my bad heart. I'm 23 years old and have still not had a doctor who will listen and understand that I am in so much pain.
Really liking your videos I was diagnosed when I was 16 was out of remission for 2 years was able to get into remission for7 years stayed healthy and worked out 5 days a week 2-3 hrs days that I was able to completely be off all meds but then moved to colorado 2 years now which shocked my body never been in a winter climate and I am on 6 diff meds I am out of remission and now also diagnosed with fibromyalgia too now been through 2 winters here and its made me into a darn vegetable having to be in and out of the ER I hate it!
Such a frustrating journey to diagnosis. I'm about 3 months in after first symptoms and getting really sick. I have a positive ANA (speckled 160), positive SSB, positive salivary gland scintigraphy, negative lip biopsy, severe muscle weakness & spasms but with a normal CK, and kidney involvement. Doctors are thinking Sjogrens (small possibility Lupus) but half my tests are negative and half are positive so I'm stuck with no treatment until I get worse 😣
I had been seeing a rheumatologist for 1.5 years before I was diagnosed in 2013 but I have had symptoms most of my life (I'm 25) my ANA was negative for a long time and when I started having more intense symptoms, they checked my ANA again and it was greater than 1:2560. Now it fluctuates between negivive and positive somewhere around 300.
Hello, I'm a 59 y.o. male diagnosed with type 2 diabetes three years ago. So I lost weight and changed my diet and also am wheat free. Because of my plummeting blood platelet numbers I was tested for Lupus. Results were positive. I have no other outward symptoms. The platelet numbers were so low I was told I'd need a blood transfusion first if I were to ever need surgery. Recently I cut my hand by accident and I couldn't stop bleeding. Not serious enough to go to hospital, but it took nearly two days for the bleeding to stop. The blood was a lighter shade of red and looked thinned out. So now I'm cautious for anything that could injure me because things could get bad quickly. By the way, I like your videos as you are doing a great thing for others who also have Lupus.
keith kapuy - Another man with SLE! We're a small minority!
I had an increased sed rate 20 years ago and they found lupus antibodies and Collagenous Colitis. I’ve had several other illnesses. My sed rates have been normal with no lupus antibodies , but I have all the symptoms and it’s extensive damage to my lungs . They found inflammatory cells in my stool. What do you think?
I got a positive ANA
And got a high anti-smith
I got recommended to go see a rheumatologist
My symptoms are
Hair loss
Headaches and that’s it I really don’t think I have it
Hello. I am new to the Chanel, but I have lupus,fibromyalgia, spinal stenosis, etc. I was diagnosed with lupus on feb. 4,2004.
15 years now iv been battling drs. 6 years ago my dr ( specialist) said might be lupus. Im getting worse now and have a list of shit a mile long and stuff still happening that dont add up!! Last week he said im sure now its lupus its time for you to do the last couple tests. Heres your papers go get blood work ill see you in 2 is Months!! Uuuugggg at this point im praying its positive at least that's an answer and some kind of treatment/help!!
I have many symptoms but I have always explained them away for another cause but I’ve had a low grade fever,fatigue and joint swelling and pain along with blood in my urine at my last dr appointment,so my sister who has lupus for many years said I should get tested.She had 2 unnecessary surgeries and multiple misdiagnosis before being properly diagnosed so I’m concerned
I've had itp when I was 9 until I was around 11 and then at 13 I was "diagnosed" with JIA...and was dealing with that diagnosis until recently. I always had a low blood count, I'm absolute anemic, and positive ANA. along with positive double strand DNA. I was officially diagnosed with lupus 2 weeks before my high school graduation.
I was diagnosed with ITP at 20yrs old and I had it about 3yrs, I got a blood transfusion from it. At 26yrs old I had 2 blood clots they never found the underlying cause. 3yrs ago they thought I had lymphnode cancer and it came back negative and today they think I have lupus bcuz once again I had 3 more blood clots that developed.
I’ve wondered so many times about a connection between Subacute cutaneous Lupus, full on SLE and multiple Sclerosis. I’ve been diagnosed with with the cutaneous version that hasn’t flared in years and MS. Lots of questions, very few answers, especially from VA doctors.
In my case my platelets are always high. I was told this indicates inflammation.
Hey Krystle! I have heard of that. I believe my platelets have fluctuated throughout the years. Lupus can also be known to I guess "eat" your platelets so I think that may be one of the reasons why they look at this for dx.
LiveHopeLupus that's very interesting
After taking Lipitor I was diagnosed, it appears that the older I get the worse I feel. I've had several test and many diagnosis, I was questioning the medication , foods and environment but got no results from my practitioner and at this point I'm on my own trying to do a diet change, meditation and exercise.
Hi there! I've been watching Lupus Stories since I got home from the doctor today. He suspects Lupus and/or RA.... or possibly MS. So.. I guess today begins my story. I am a cancer survivor, so I have tons of scans and a well documented history to help me out in the diagnosis process. They took all kinds of blood today. I'm going back tomorrow to give urine (performance issues ;)). Thanks for posting helpful information!
Gingersnap Jeep Girl I hope you are able to get a diagnosis soon. Best of luck!
@@HealWithSamantha Thanks so much!
@@HealWithSamantha You know what is so striking to me? How LITTLE I know about this disease!!! Especially after reading medical journals and watching med school lectures and discovering how many lives have been touched... specifically, women. I am blown away at how little I know going into this. Also, I can't speak for all cancer survivors, because as you know everyone's experience is different. However, I can speak for myself when I say that the symptoms I have been experiencing have been as painful and sometimes more debilitating than my cancer ever was. This makes it even more difficult to wrap my head around the fact that I know so little about this/these diseases. I applaud you for making videos!!! Thanks again!!!
Gingersnap Jeep Girl thank you for sharing and yes, it really is scary how many people know so little about lupus and other diseases similar. You’ve had two tough worlds collide. I commend you. You’ll get through this fight too.
I had only ANA positive testing that came 1:320. After 2.5 years with variety of symptoms.It's very high, but I didn't make any further testing, as I broked my spine and had to recover for 6months :) Will do it soon. My symptoms are really bad panic attacks and in the same time recently low blood pressure, skin issues, eyebrows hair loss, fatigue, sudden change in the mood, headache (very strong) and so on.
Do you had any answer or diagnosis my ana is positive to
Doctors tested me for lupus nearly 10 years ago as I have quite a few of the symptoms as well as family member with lupus but my ANA was negative they now want to re test for it after an eye problem has anyone ever had a neg ANA n then later in life a positive one ? Xx
My diagnosis took over 16 years. Have had problems since childhood like anemia, always ill etc. First time I had photosensitivity was at 18 or 19 years, seems I had Mono right before that so that may have triggered something. Had a huge rash, lost a lot of weight and was so very ill I could hardly walk, they did find some bloodwork different from normal but never told me what. Got a little better but problems never went away completely. Took another 16 years before they found enough symptoms to get the diagnosis. Did have B12 deficiency before, think at age 26-27 but seems I had that from small child as well, so that could explain the problems in my childhood and why it was so difficult to get a diagnosis.
As if 2 auto-immune diseases was not enough, at age 39 Hashimoto popped up as well and at 41 Rosacea, now at 43 seems I have Psoriasis as well. Sometime I wonder what is next... Once you have an auto-immune disease you are prone to get more, Pernicious Anemia (B12) and Hashimoto love to come together with Lupus or so I am told :/
@@veronah.6553 OMG ! join the club! I had mono twice. I have Hashi's. Now it looks like the wolf is here! OMG.
I’m in the process of getting SOME kind of diagnosis. My Internist is kinda at a loss. I have many of the symptoms of Lupus and she thinks it might be. I don’t have the butterfly rash though. Back in late December/ January I started to lose my hair DURING iron infusions (not while i was anemic but actually during the weeks I was getting the iron). I was diagnosed official 3 weeks ago with Alopecia. I’m now bald. My joints are ALWAYS hurting to the point where I can’t hold a cup or walk at times. Back in November my inflammatory markers in blood were “normal” (before the Alopecia started...another autoimmune disease). My CBC’s have dropped and are just barely at the low range of normal and my iron has dropped 40 points in 3 weeks. 🙄 I just had more blood drawn to check the markers again. I have IBS and my Internist who is a saint, is sending me to a rheumatologist. Hopefully that won’t take long to get in. I certainly don’t want Lupus and at the same time, I just want someone to tell me what’s wrong with me. I’m exhausted 24/7 (this from a chronic insomniac who now sleeps 80% of the time). The Internist just prescribed Celexa for the pain but the pharmacist said it’s for depression so now I’m totally confused as I’m already ON an SSRI. Does anyone have experience with Celexa for the joint pain? Does it help? Does it cause weight gain as I refuse to gain weight! I’m at a loss as my doctor thinks there’s a good chance I have Lupus and it’s just not showing up in the blood fully yet. Any suggestions or thoughts or words of wisdom would be greatly appreciated. My massage therapist suggested CBD dominant oil (so none of the psyco parts of the plant in the oil. Just the inflammatory properties) as it’s now legal here in Canada and I can actually buy it through the Gov’t website for my province. Thoughts? Words of wisdom? Ideas? Experience with Celexa? Thanks to all who may reply!
I have many symptoms of lupus but unfortunately I haven't been diagnosed just yet. They've diagnosed me with kidney disease, epilepsy, protein c deficiency, colitis, Gerd, crohns disease, peripheral neuropathy, and lots of my family has lupus but they are having a problem diagnosing me. My platelets and rbc are always low. There's been a few times my Sed rate was high. It's so hard when you don't have insurance and you are using rent a doctors. You look amazing and I love your positive attitude. What symptoms did you have that pushed you to get checked?
i am going for bloodwork on monday.. i’m having a lot of symptoms and i have a family history of lupus /: i’m not too excited
I was diagnosed with ITP low platelets before I found out it was lupus causing the low platelets. It took 3 years to find out. One day I was sitting outside in the sun watching videos on my phone and my veins on my leg were coming to the surface and my leg was in great pain. Then it felt like I had a cold. My PC thought my platelet count was dropping again and told me to go to the ER. The ER did nothing for me besides give me an IV. They could not figure out whats wrong. My PC has me take another blood test and everything came back fine except for my platelets which I knew about already and ANA. I have burning sensations,blood in my urine, butterfly rash, spider veins, swelling in joints, toes, and fingers.Sunlight kills me and makes my pain a 10plus. Ive been in pain everyday for over a month and really miss my old life. It sucks knowing that this is my life from now on. I'm also worried about not being able to carry because I really want kids. I've been crying daily about this.
I’m 13 and I’m getting tested this Thursday I have almost all the symptoms and I struggle to go school I’m nervous to find out
Hi Sam .. my name is katie and im 38 ..Im so sorry you have to deal with a chronic disease like lupus and the many other autoimmune diseases you are also living with,it must be so scary not knowing whats around the corner and what symptoms you are going to have to endure on a daily basis,but i thankyou for sharing your story xx I have been having chronic symptoms consisting of itchy rashes on my face and neck due to food sensitivities, sore muscles,iron deficiency,ibs,gerd and tiredness ....I was referred to a specialist by my doctor...I am currently doing 24 hour urine tests...My Ana titre was 1.320...and my nan has lupus...I'm a little scared...any advice you could give me would be much appreciated...xx
All my lupus blood tests were negatives except for the antismith antibodies borderline
So I had to do a biopsy which showed I have 15% lupus in my kidney
Hind Yehia hey omg I have the same exact issue. I had my ANA tested, came out positive but all other antibodies were negative EXCEPT Anti-Sm antibody - normal range is 0-0.9 but mine was 1.3 (mildly positive as my rheumatologist says) so same boat as you. Any updates on your situation? The doctor is monitoring me now
My ANA was 1.40 positive at first, and all other tests were ok.
mine too now its up to 180
Three times tested ANA always positive and Doctor says no even through dry mouth, dry eyes,
Breathing, legs swollen for the past year. Last three months on prednisone, low immunity,fatigue
Gout, is so bad, yes I am a 65 year old man
Thank you so much for sharing this video with us all I have rhuematoid arthritis since 5 years now and because of that almost all my joints are affected especially my jaw joints it is hard for me to chew my food and it is difficult to open and close my mouth too.
I just got tested. I'm sure the VA will screw it up, welcome to "can I pay you to not treat me?"The regular hospitals misuse my insurance a lot and thus confuse my diagnosis, but there's a higher chance of survival. I became very ill while I was with my grandma at the lake but hid it. I've had the rash on and off since 16. I used to blush easily and had rosy cheeks when I was younger, so. I had them do blood tests today, and I was borderline anemic last time they checked and growing up, too, but I have been anemic and/or malnourished before. I wonder about my nutrient absorption at times. I want to eat constantly. I grew to be several inches taller than they thought I would. I was in Germany in 1986 in my mother and then born. I don't know if you have "Raynauds" or anything else. I also have psychological problems when I'm cold for too long. It will get to the point where I cannot warm myself up. I take showers in the winter. It is not as bad as when I was a teenager because I have a good coat now and other things, and I'm not out for hours upon hours. My mother had arthritis in her 20s...She has a weak body naturally while I do not. I used to be way stronger than both of my parents. But I was sick for years of my childhood and developed schizophrenia around 8, like full-blown. I've had a lot of physical, social, and economic trauma. I've had a murmur and a lot of other things. Head injuries. I laugh, those of us bound by mortal chains. A lot of people do not understand this. You're so tough, right. Good luck. I've been put into homes due to my schizophrenia, but um, I wish they had nice ones :(. I have issues being by myself and on my errands. Wah, wah, I know. I'm also diabetic.
Hey :)
Thank you for your video. I have a few questions that I would love answered. I have been battling with sickness for a very long time, almost all my life. Some of my physical symptoms woudl become so intense that i would miss work and it even cost me my job twice.
The doctors are considering lupus, now. I have a lot of the symptoms. I just got 10 tubes of blood, urine, stool sample very recently.
Im tired of being so sick all the time and missing work. Literally the fatigue, unexplained fevers, dry eyes/mouth, headaches, exhaustion/pain when in sunlight (which is a lot because i dont drive - i take the public buses), joint pain, excessive hair loss, frequent infections, etc. have been screwing up my life. I feel so so SO sick all the time. And im missing enough work that i cant pay my bills now.
I am tired of feeling sick and scared to death of them still not knowing what is wrong so that i can get proper treatment. I dont know what my ANA results or red blood cell results are yet, this was just done a few days ago. I havent seen a Rheumatologist yet, i have been referred and trying to get set up, but all the labwork is being sent straight to whomever i see.
I do know that my complete blood count came out normal about a month ago when i had labs done in the ER. According to them i do not have anemia or low white blood cell count.
I was just wondering if it is possible to have Lupus if this is the case? I have all but two of the Lupus Symptoms on the Lupus website, and all but two from Mayoclinic's symptom list at well. I am so so SO frightened of still not having answers (and therefore treatment). Literally, I am 23 and have missed so much school, work, church, and life because of being so sick like this off and on. I need answers, and when you said about the anemia and white blood cells it frightened me a bit because i am afraid it means i likely dont have it and therefore still dont know what is wrong.
Any ideas? And if you do have any ideas pertaining to this, do you think this would make it take longer to get a diagnosis? Six years sounds so terribly scary. Especially when you have no family support and you are about to lose your apartment...
Jesusfreakmusicgeek hi! I had a positive ANA test while all my other test were negative and am currently being treated for Lupus based on the ANA and meeting some of the criteria, so yes you can still get a diagnosis. Good luck
Oh gosh... My ANA was positive.... Twice. I went to get checked for RA, and it came back negative. Doctor said tests were all negative in 2016. Went back this year in 2019, and guess what, come to find out my tests were not all negative. ANA positive twice and scl-70 jumped from 1.9 to 2.7🤦🏾♀️. I feel so lost trying to figure it all out. I have some symptoms of lupus and mixed connective tissue dieases. Now I'm just waiting to see the Rheumatologist.
Hi, do you have an update. I’m
Searching through comments trying to see someone say something like this. My scl-70 was 6.3 in 2018 and I’m just now seeing those results ! I’m a bit terrified. Would love feedback
Hi...yes I do...my scl-70 titer was really low according to my dr. He told me not to worry about it and get on with my life.Unfortunately I couldn’t see him again for a follow up bc he passed away before my June appointment. I’m glad I did fight to see someone bc it put me and my family at ease. I’m doing fine and planning on extending my family really soon. Stay on them and be an advocate for your health if you’re not feeling what their saying to you. Take care❤️❤️
Channel Daniels thank you so much for your feed back & I wish you the absolute best with your future.
AllThings Bi ...of course...and thank you asking. I totally forgot I posted this, but I’m glad I could answer you back.
Holy crap, I have 8 out of the 11 symptoms. I am yet to be dignosed. I first got sick at 14 with blisters from the sun all over. I have a neurologist appointment in august. Hoping for a dignose. I am 43. I have uncontrollable seizures but no one has been able to tell me why.
Don't know.
DId you have the butterfly rash? Or in what order did you have symptoms?
Been diagnosed with Sjogrens due to ana being high and specific antibodies... but after a few year my doctor has started testing me for lupus. Still waiting on bloodwork... hoping to get some answers soon.
I have lupus ra and raynods and a couple of other things I was 13 when I was diagnosed with it it has been almost 1 year since
The blood tests are not always accurate.