Great Video, finally I was told I had Lupus in 2008 after years and years of illnesses, low blood counts so low doc said he couldnt understand how I could make it to his office, oh the swollen lymps in my neck throat were so bad they almost traicked me in hospital in 04 still no diagnosis,, Thank ears nose and throat doctor took on look at the sores on my skin arm and said do you get those often, I said all over and he looked at couple more and the scaring and said YOU HAVE LUPUS!
then he continued to look at all my records and said I had all the symptoms and blood counts were always so low.. now that was a start of everything,, I had an ablation to stop my periods to help with blood counts, was put on steriods blowed me right up, so I stopped those, Hate the summer as soon as I walked outside in the sun I could almost faint But loved the cloudy rainy day for gardening in the mud, and now its 2012 and hands are so swollen all the time and hips are grinding, pain managemt
Celebrax and Morphine now ER visits are still the same every month or so, Ct scans show swollen abdomen and uterus, so gonna have that out soon, but other than that I have a great life with great kids and a great hubby, they all know have to let my meds kick in before I get outta bed other wize have a hard time and the side affects are dizzyness, My house is always full of love and happyness, Some good days and some bad days, they just ask good day today or bad,, think they finnaly accept it..
Doctor told me in ER its time for pain management and thats all they could do, I do feel better and do much more but I just never like to have to take them Its been only three months I try not to take to much Im afaid they will cover up to much symptoms and I wouldnt reconize when I need antibitics, Usually once a month or then sometimes not for months,
Correction - I don't know if it was Lupus for about 10 years. I was diagnosed with fibro a few years before the Lupus diagnosis. Just wanna be more accurate... Lol. Take lots of omega 3's, vitamin D, and magnesium with malic acid helps.... Of course Plaquinel was Very helpful for me. Stress makes things much worse and I hope those of you who also have Lupus learn to avoid it like the sun. Take care, my thoughts are with you.
I was bed ridden for three years. First rheumatologist said I didn't have Lupus because my ANA was negative. Second rheumatologist did more extensive tests and diagnosed Lupus. I had bad symptoms for about 10 years before my diagnosis. It's so good that you've done this video as there must be so many others who suffer for lack of knowledge. This video will go on one of my playlists on my channel. Thank you so much for putting it up. It will help me go forward with a charity I'm starting. Thank
Its like noone understands the tiredness its just so sad how they try to put it on the back burner. I have had sle since 2007. I had seizures...memory loss and all other things been on the steriods forever.
Cover up your Lupus scars with Dermaflage- our customers cover their scars everyday and no one knows they are there. You no longer have to just live with them!
I have lyme disease and after having a bad reaction to bactrim, I am very scared I now have lupus. I can't live this way if I do. I just can't and I won't
your lupus may have been triggered by the bite of a tick. there is a holy kingdome and an unholy kingdome. the replica of you (in your assimilation, elimination...) would undermine your stuff and live although dead and you are sort of dead. in germany the corpses or even the living must pass via cross Ger. Hebrews (Hebräer). then egyptian like practises or medieval time practises of your stuff? thus bad old dead creatures have risen again from the total dead by stolen goods to come as saviours?
im just findiing out that i have lupus in tired all the time and im trying to get people that im around belive i doent fill good and that i have lupus and i wish they would belive they just doent want to belive i fill like crape some days and thats diffrent joint hurt and every day is diffrent thanks for the videos i have lurned a lote tanks again.
People I'm not spamming or joking or trying to con you, I'm just spreading the good news. There's a monk in UK that is curing people of this disease and you don't have to pay a dime,you only give a donation if you feel he has healed you, that's the truth,
he has healed people I know! that's why I'm spreading this message!no lies,no junk and its free! no healing don't give a donation!please help me spread the good news!LOOK HIM UP HERE.
I lost my mother due to Lupus disease 4 days after Christmas in 2009. She also had cryoglobulinemia and she suffered every day. She got pneumonia 1 day after Christmas and her immune system couldn't handle it. Lupus is a serious disease and thank you for this video.
i walk for lupus just found out i have had discoid lupus for 3 years and did not known it and it too another 2 years of going to doc to doc tryn to find out what was wrong so now i have alot of scaring on face and hair loss. I LOVE UR VIDEOS U ARE THE ONLY ONE REALLY !!u help me walk threw this THANK YOU!
OMG this video has helped me so much, I just got my lupus diagnosis a few months ago. I have been battling this for three years and finally have a diagnosis. They say I also have metabolic myopathy. This is all very scary.
Thank you so much for sharing thiis information. I truly from the bottom of my heart wish you the best.
I'm sad because one of my sister's just got diagnosed with this disease last week, she is pretty scared. She is married and has two children my nephew 9 years old and my niece 5 years old. I think our family is still in denial, we need to educate ourselves about this disease. I will make sure that my family is educated about it so that we can provide all the support to my sister...
thank you for doing this video. I never ever had an ANA, I was born with it and no one ever knew what was wrong with me. I am now 46 and just found out I have SLE and discoid, my test that they found in it is an Anti-DNA blood test. I can not thank you enough for doing this, I want to cry because I was riduculed all my life but stayed strong. I needed to know this information, although I had to find out myself through many hardships. You are very pretty and the lupus does not effect your looks.
i have a possibility of having an auto immune disease like lupus. they said its a small possibility of lupus but they dont really think it is. they think its lymes disease but my test came back negative. i have lethargy and i woke up one morning to excrutiating pain in my knee joint and when i wokeup it was all swollen. i also have been suffering from chronic dandruff since i was about 11 (im 15 going on 16 now) that flared up as my joints did however it might be a coinsidence. we dont know yet
It took me years and years even to get a ANA test and the minute I got it, they immediately referred me to a dr. but I spent years with people telling me i was having panic attacks or just regular arthritis...I forced them to give me an ANA test and it came back positivie
help i have been telling doctors for three years that something was wrong they just tild me i have lupus but they wont tell what to exspect as a matter of fact they said go on the internet im so unsure whats going to happen now am i going to have a heart attack or a stroke im 45 and i cant get doctors to act on this i see one then they tell me to come back in a month or two i wonder how long it took you to get them to take you seriosly
help i have been telling doctors for three years that something was wrong they just tild me i have lupus but they wont tell what to exspect as a matter of fact they said go on the internet im so unsure whats going to happen now
@livingwright45 The best thing you can do is to find a support group for people in your area w/lupus and ask for recommendations by word of mouth. I had a major run-in w/my own rheumy. He refused to keep me on the only drug that was slowly the progress b/c I happened to be dx'd w/ a retinal eye disease & the pill taken at the dose to be effective against lupus caused retinal damage. I sat in his office w/my guide dog & asked he thought the pill would do- make me blind? I was THERE! ROFLMAO!
I was diagnosed with this yesterday. The first sign was that my fingertips started bruising and turning blue and purple. My fingers then got purple lesions in a span of a week. They say it's SLE lupus. I am in so much pain, it's unbearable at times. My parents refuse to understand it and are not supportive at all. Now, the both of my hands are now swollen like balloons. I have a positive ANA. The other sign was flu-like all the time. Thank you for this video.
i have days like explained @ 3:42 to 3:55. my own mom believes im faking having lupus because of that. ive had it for 7 years now(im 22). one of my big problems is fevers and seizures(my mom thinks i fake those too).
im glad i found this video and glad you posted this Michellemim. Maybe just by watching this one video, my mother can get to understand this disease more and how we cope with it.
Thank you for you time in making this video. I was being treated for "undiagnosed lupus" there was no treatment at that time not sure if there is now or not. So the Dr was treating "my symptoms" after switching Dr's I found out that I do have MS so I do understand some of what you going through and I am sorry I pray for a cure for all of us. ♥
my best friend has lupus and has had it for years. she's only 20 now and was diagnosed when she was 16. It's hard to live with, so if you know someone who has it, love them, understand them and be there to support them over and over again.
I recently was diagnosed with Lupus. I first noticed when I was in the military in 2004. I went and asked the doctor about it and he said it was no big deal, just marks. 6 years later I am still strong but the marks have covered my body, except for my face and legs. Even my tongue has Lupus now. I wish I had been diagnosed correctly when I first made an appointment with a dermatologist in 2004. Fortunately I don't feel sick, at least yet. I still go jogging at least twice a week.
I recently was diagnosed with Lupus. I first noticed when I was in the military in 2004. I went and asked the doctor about it and he said it was no big deal, just marks. 6 years later I am still strong but the marks have covered my body, except for my face and legs. Even my tongue has Lupus now. I wish I had been diagnosed correctly when I first made an appointment with a dermatologist in 2004. Fortunately I don't feel sick, at least yet. I still go jogging at least twice a week.
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i just want to say a big thank you for ur post im a 29 year old woman i told i had sle after i had my 1st stroke( ive had 2 in a year) .They have now found i have fibromyalgia and a pfo , im a single mother of a little boy age 22 monthes and in the uk most of the doctors dont think lupus is a real thing only my neuoloigist and my gp so i had to leave my home and move in with my mother to help out when she isnt in work and helps me when im in a bad flare up or trying out new drugs to help . x
@tina7ful Yes, but it's rare. A more likely culprit would be the meds taken to treat SLE. But this too is rare. Steroids and Plaquinel are the main SLE drugs that can affect the eyes. It is vital with SLE, before starting treatment on certain meds- to have a baseline eye exam, and in particular- a "visual field test" done by an opthomologist. Then, annual exams of the same to monitor any changes. Call your treating physician immediately should you develop any symptoms or changes.
@tina7ful Yes, but it's rare. A more likely culprit would be the meds taken to treat SLE. But this too is rare. Steroids and Plaquinel are the main SLE drugs that can affect the eyes. It is vital with SLE, before starting treatment on certain meds- to have a baseline eye exam, and in particular- a "visual field test" done by an opthomologist. Then, annual exams of the same to monitor any changes. Call your treating physician immediately should you develop any symptoms or changes
I have discoid Lupus it get's so bad that I do not leave the house as people stare and point at me. Even at the supermarket they will change lanes to avoid me. I take steriods but hate what they do to me. Quite by accident I had a gum infection and my dentist prescribed me an antibiotic, my Lupus dissapeared for a month, no moon mace no weight gain, I cant wait to get back to the UK to find out the name of this medication. I will keep you posted.
Thanks for putting this up. I also have lupus i have SLE. i could never do what ur doing. i got mine almost 2 years ago i was 11 i was pretty young to get it. I was really upset & mine was BAD some of the doctors told my mom i wouldnt survive so it was really scary 2 but it changed my life! i hope urs is getting better. the steriods were horrible i lost all of my friends cuz of what i looked like + i fractured my ankle & have a bone fragment in my knee cuz of the rapid weight gain. thanks again
I recently got a diagnosis ... I'm a 22 year old male. My ANA levels range on average between 400 - 650. X>2560 during 'flareups'. I've had over the years different symptoms however for the most part I've managed unknowingly without any medication. Recently I've been experiencing photo-sensitivity, and recently had a very obvious 'butterfly rash'.
My question is, anyone else experienced intense and totally random feelings of extreme anxiety (panic)? Has medication like Panqueline helped?
my mother was diagnosed with fibro myalgia first then a number of other things now lupus....she has very bad flare ups that began at her feet now her mouth and face....please keep us in your prayers and i'll do the same!
Thank you for posting this video. I think I might have Lupus (I've been diagnosed with fibromyalgia but I haven't had blood tests so they don't really know what I have), and I don't really know how to bring it up to my doctors (They are nincompoops who don't really want to treat me at all). Any ideas?
i have lupus a couple of months ago i started to have joint pain. at first dey said it was drug induced and i beilive and pray dat it is. acne medicine induced my lupus becuase no one in my family has this. im scared but im hopeful im on steroids and i think the drugs demselves are making me go insane. i was perfecttly healthy before never missed a pieriod never even gotten sick. am i going to continue to get more symtoms like liver heart lung problems?
I'm sorry about your diagnosis... Try not to be scared... easier said than done, I know but stress can bring on symptoms. It's hard to say how things will go.. Lupus is very unpredictable and no two patients are alike as far as symptoms go.. some people live long and have mild lupus, some go back and forth and others get organ involvement, etc... The best things to do is to stay away from the florescent lights and the sun and live as healthy as possible so you'll be as healthy as possible.
@belladiana09 I was diagnosed approx 10yrs ago already in the mod to severe stages. I had not only Lupus (SLE - worst type of lupus), but Sjogren's disease too. Lupus & Sjogren's are generally diagnosed together. All my aunts/uncles (maternal/paternal) have some form of autoimmune disease. I'm the 2nd of my generation to be diagnosed, 4 others follow me w/diagnoses, some w/Lupus, Lupus/Sjogren's, & Rheumatoid Arthritis. I hurt all the time w/no relief. Pain sometimes is tolerable, but never gone
The one thing I found that may have helped prevent my ANA titers from rocking back & forth was to not take anything for the joint pain for at least 3 days prior to my visit where they were doing a blood draw for the ANA, which was every week 2-3x a week for 5 - 1/2 mos. W/o the ibuprofen, my titers showed in the high markers for lupus w/ few if any dips to claim the contrary. It also allowed the findings of Sjogren's, & I'd come out of remission. Arthritis was everyday life for me. It was lupus
I have lupus and it took a long time to be diagnose, I had everything , and all the doctors keep telling me I had HIV or cancer , but tests prove them wrong, until one of them decided to test me for SLE , and was + and my VDRL + this is being a long journey , but overall I tried to not get streess and exercise whenver I can. so I understand and support you.
I think I have discoid lupus. I've been getting these flaky ring like lesions on my nose and cheeks all throughout high school. My scalp also gets very flaky. I think I should see a derm. Thanks for the video.
I had something similar on my face. At first it started like a small dark bug bite. Then it grew and the flesh began to "eat" on itself and flake... I don't know how to describe it because I was 11 at the time. It sounds similar. Mine was red dark and sore. I had to have the spot removed. I went into remission afterward. Luckily my family doctor talked to her friend doc, and he saw me and decided "hay I wonder if thats lupis" and so began my 2 year diagnosis.
Keep an eye on your skin, avoid going out in sun at peak times. That really helped for me, but its hard to say with Lupis because it can randomly start up and go back into remission.
Discoid can become systemic as I recently found out. >.> Goodluck to you and I hope you stay lucky for as long as possible.
I hate this, but the fact is I have cried watching your videos. My wife has been bounced around so many times. She takes so many medications. We came to the conclusion that she has lupus. But, an expert looked us in the eyes and said "No you don't have lupus, but when you have more symptoms let me know." Really, I am so tired ;my wife has lived with this for so long; and someone is going to say to us WHEN you have more symptoms let me know. I don't know what to do anymore. I cry that's really it
Its OK TO CRY. BUT DONT GET TOO CAUGHT UP IN IT. Just let it GO. I have had Lupus for 15 years. Took me 9 years to get diagnosed. I NEVER HAD A POSITIVE ANA, But I had ALL 9 Symptoms the wole time. Dr's at the Medical College of Ohio finally threw up their hands and diagnosed me.
It's not BUT, often times the symptoms are similar and Doctors will check you for lyme disease... Lupus can mimick many diseases and Lymes disease is on of the many.
HI... I'm going to email you some links... There's a small chance of discoid lupus evolving into SLE (systemic) lupus.. it's small and they aren't sure why some evolve and others don't.... staying away from things that flare you, sun, floresent lighting, keep stress down, etc... is always in your best interest. lupus foundation of America and Alliance for lupus research are good sites to visit as well as mayo's website. I hope that helps and I'm sorry you have to deal with this. Best wishes.
Hi and thanks for your quick response. I was diagnosed with skin lupss about 10 years ago, when they performed a biopsy. It hasn't affected me physicaly, other than the abnormal skin rashes. I really don't know much about it, but.
I welcome any info you can pass on to me. Thanks again.
You're welcome! I just sent the email but also, for others, I am putting some links in the description box as well. Also, the google search term I used is:
"percentage of discoid lupus evolve into sle lupus"
Which has a lot of informative sites in the search results. Hope this helps and thanks for the question... It's a good questions and will hopefully help others too!
Also, to: ThatCriminal, I want to remind you too that children get lupus, young children. I myself have had it since I was six. I had rheumatic fever & due to being genetically predisposed to it, they believe that is what triggered it, (made it active).
I'm sorry your cousin has Lupus but I'm more sorry that anyone would blame her for having it as you can not catch it no matter what... not even by blood exchange. I really hope you'll read up about it & educate others in your family about it.
it's the exact opposite .. Lupus is an over active immune system.. so active that your antibodies multiply do to a genetic issue... they then become so many that they attack your body. It is not something you can catch. It is not an autoimmne disease like hiv/aids.. it's the exact opposite .. Lupus is an over active immune system.. so active that your antibodies multiply do to a genetic issue... they then become so many that they attack your body. It is not something you can catch.
Lupus is a Connective Tissue Disease. For example, Crohn's disease is a connective tissue/autoimmune disease of the digestive system, or scleroderma, sjogren's, even psorisis, fibromyalgia, rhuematory arthritis.... All of these are connective tissue autoimmune diseases just like Lupus is. they are no contagious in any way.
I'm sorry I deleted your comment... but I'm not sure where you heard it's contagious.. Please look it up so you can verify what I'm saying... You can not "catch" lupus.. especially from sex. It is not an STD in any way shape or form and is not a virus. I thought you were being mean when you left that comment but now I realize that you really think it's contagious. It is genetic, they have found that people are genetically predisposed. It is not an autoimmne disease like hiv/aids..
I want to thank you for doing this video. I know we have talked about it and it is so true. So many people judge us and it is unbelievable yet hurtful. Your swelling isn't too bad, the worst part is you probably know what is going to happen. When I first went through it I didn't know what would happen, and it was worse when I knew it was going to happen again
Thank you.. you're right.. I think knowing what is going to happen.. it bothers me a lot more.. the first time, I didn't really know what to expect.. didn't understand what was happening.. because it was more than the moon face, it was all over my body.. and it hurt... ths time, it's better in some ways that I know, not so good in others. ;) Thank you and I wish you THE very best with EVERYTHING..
Thanks feaguita, I'm hoping this vid will come in handy for those new to the disease but also their family and friends since we all go through that ever too long period of "but you look so good, how can you be so sick" thing. It's not the best, but I hope it helps. Thanks to you to for such kind words and for being so supportive. Big hugs to you!
Over time, like kidney disease, sjogrens, usually it's mild secondary diseases or conditions... Lupus doesnt' like to travel alone.. some people only get Lupus and reynauds and a skin cond, some go on to get mixed connective tissue disease... Early diagnosis helps, proper treatment is a good way to prevent further damage.
hey mom this is a really true and good video. you have such different symptoms then a lot of your lupus friends. im happy your doing these videos i think its going to help a lot of people understand more about lupus :). and hopefully create more research leading up to a cure or treatment. well i love you lots :)
Again, Youtube comments are only taking about 10% of the time.. not sure what's going on. My daughter tried posting a comment 8 times or more.. Anyone else having a prob with it?
I couldnt have said all that you've said better than that, thanks...
LaughsatVideos 1 month ago
Great Video, finally I was told I had Lupus in 2008 after years and years of illnesses, low blood counts so low doc said he couldnt understand how I could make it to his office, oh the swollen lymps in my neck throat were so bad they almost traicked me in hospital in 04 still no diagnosis,, Thank ears nose and throat doctor took on look at the sores on my skin arm and said do you get those often, I said all over and he looked at couple more and the scaring and said YOU HAVE LUPUS!
LaughsatVideos 1 month ago
then he continued to look at all my records and said I had all the symptoms and blood counts were always so low.. now that was a start of everything,, I had an ablation to stop my periods to help with blood counts, was put on steriods blowed me right up, so I stopped those, Hate the summer as soon as I walked outside in the sun I could almost faint But loved the cloudy rainy day for gardening in the mud, and now its 2012 and hands are so swollen all the time and hips are grinding, pain managemt
LaughsatVideos 1 month ago
Celebrax and Morphine now ER visits are still the same every month or so, Ct scans show swollen abdomen and uterus, so gonna have that out soon, but other than that I have a great life with great kids and a great hubby, they all know have to let my meds kick in before I get outta bed other wize have a hard time and the side affects are dizzyness, My house is always full of love and happyness, Some good days and some bad days, they just ask good day today or bad,, think they finnaly accept it..
LaughsatVideos 1 month ago
Doctor told me in ER its time for pain management and thats all they could do, I do feel better and do much more but I just never like to have to take them Its been only three months I try not to take to much Im afaid they will cover up to much symptoms and I wouldnt reconize when I need antibitics, Usually once a month or then sometimes not for months,
LaughsatVideos 1 month ago
Correction - I don't know if it was Lupus for about 10 years. I was diagnosed with fibro a few years before the Lupus diagnosis. Just wanna be more accurate... Lol. Take lots of omega 3's, vitamin D, and magnesium with malic acid helps.... Of course Plaquinel was Very helpful for me. Stress makes things much worse and I hope those of you who also have Lupus learn to avoid it like the sun. Take care, my thoughts are with you.
remedyfarm 1 month ago
I was bed ridden for three years. First rheumatologist said I didn't have Lupus because my ANA was negative. Second rheumatologist did more extensive tests and diagnosed Lupus. I had bad symptoms for about 10 years before my diagnosis. It's so good that you've done this video as there must be so many others who suffer for lack of knowledge. This video will go on one of my playlists on my channel. Thank you so much for putting it up. It will help me go forward with a charity I'm starting. Thank
remedyfarm 1 month ago
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BBtammi 4 months ago
thank you for educating those of us who really don't know about lupus. you are truly a wonderful educator. i wish you the best. take care.
julieannemichelle 4 months ago
Its like noone understands the tiredness its just so sad how they try to put it on the back burner. I have had sle since 2007. I had seizures...memory loss and all other things been on the steriods forever.
tbyrd776 4 months ago in playlist tbyrd776's favorites
I'm studying this right now in a nursing program. Thanks for the video. Best of luck to you!
Pilot9r 4 months ago
Cover up your Lupus scars with Dermaflage- our customers cover their scars everyday and no one knows they are there. You no longer have to just live with them!
Dermaflage 5 months ago
I have lyme disease and after having a bad reaction to bactrim, I am very scared I now have lupus. I can't live this way if I do. I just can't and I won't
biglogstrongman 5 months ago
your lupus may have been triggered by the bite of a tick. there is a holy kingdome and an unholy kingdome. the replica of you (in your assimilation, elimination...) would undermine your stuff and live although dead and you are sort of dead. in germany the corpses or even the living must pass via cross Ger. Hebrews (Hebräer). then egyptian like practises or medieval time practises of your stuff? thus bad old dead creatures have risen again from the total dead by stolen goods to come as saviours?
Zouscarlett 6 months ago
im just findiing out that i have lupus in tired all the time and im trying to get people that im around belive i doent fill good and that i have lupus and i wish they would belive they just doent want to belive i fill like crape some days and thats diffrent joint hurt and every day is diffrent thanks for the videos i have lurned a lote tanks again.
sadihymas 6 months ago
This has been flagged as spam show
People I'm not spamming or joking or trying to con you, I'm just spreading the good news. There's a monk in UK that is curing people of this disease and you don't have to pay a dime,you only give a donation if you feel he has healed you, that's the truth,
he has healed people I know! that's why I'm spreading this message!no lies,no junk and its free! no healing don't give a donation!please help me spread the good news!LOOK HIM UP HERE.
bodybuddha.co.uk
rockcityaudio 7 months ago
I lost my mother due to Lupus disease 4 days after Christmas in 2009. She also had cryoglobulinemia and she suffered every day. She got pneumonia 1 day after Christmas and her immune system couldn't handle it. Lupus is a serious disease and thank you for this video.
Doyledeth 7 months ago
i walk for lupus just found out i have had discoid lupus for 3 years and did not known it and it too another 2 years of going to doc to doc tryn to find out what was wrong so now i have alot of scaring on face and hair loss. I LOVE UR VIDEOS U ARE THE ONLY ONE REALLY !!u help me walk threw this THANK YOU!
brwandi 7 months ago in playlist favorite songs
OMG this video has helped me so much, I just got my lupus diagnosis a few months ago. I have been battling this for three years and finally have a diagnosis. They say I also have metabolic myopathy. This is all very scary.
samkayrey1 8 months ago
Thank you so much for sharing thiis information. I truly from the bottom of my heart wish you the best.
I'm sad because one of my sister's just got diagnosed with this disease last week, she is pretty scared. She is married and has two children my nephew 9 years old and my niece 5 years old. I think our family is still in denial, we need to educate ourselves about this disease. I will make sure that my family is educated about it so that we can provide all the support to my sister...
tetufrancia 9 months ago
The video of Jax said it was removed by the user.... :(
CNDbutterflybabe 9 months ago in playlist favorite songs
thank you for doing this video. I never ever had an ANA, I was born with it and no one ever knew what was wrong with me. I am now 46 and just found out I have SLE and discoid, my test that they found in it is an Anti-DNA blood test. I can not thank you enough for doing this, I want to cry because I was riduculed all my life but stayed strong. I needed to know this information, although I had to find out myself through many hardships. You are very pretty and the lupus does not effect your looks.
Lauren110964 9 months ago
joints painful to walk or do things like clean im yried all da time
Ihavelupus2 10 months ago
hi I have lupus I get sick feeln bad cnt get out of bed sick flu like feeln
Ihavelupus2 10 months ago
This has been flagged as spam show
Search youtube baby testimony that was cured of Lupus with 4Life Transfer Factor ... is a video in Spanish but it is real ......
Search youtube "Niña con Lupus Factores de Transferencia.wmv 4LIFE"
TONYJASD 1 year ago
This has been flagged as spam show
Search youtube baby testimony that was cured of Lupus with 4Life Transfer Factor ... is a video in Spanish but it is real ......
Search youtube "Niña con Lupus Factores de Transferencia.wmv 4LIFE"
TONYJASD 1 year ago
This has been flagged as spam show
Search youtube baby testimony that was cured of Lupus with 4Life Transfer Factor ... is a video in Spanish but it is real ......
Search youtube "Niña con Lupus Factores de Transferencia.wmv 4LIFE"
TONYJASD 1 year ago
i have a possibility of having an auto immune disease like lupus. they said its a small possibility of lupus but they dont really think it is. they think its lymes disease but my test came back negative. i have lethargy and i woke up one morning to excrutiating pain in my knee joint and when i wokeup it was all swollen. i also have been suffering from chronic dandruff since i was about 11 (im 15 going on 16 now) that flared up as my joints did however it might be a coinsidence. we dont know yet
tilliez 1 year ago
hello, i have good news, use cryptomonadales can help LUPUS
toko88jaya 1 year ago
Thank you for this video.
hXcPoptart 1 year ago
It took me years and years even to get a ANA test and the minute I got it, they immediately referred me to a dr. but I spent years with people telling me i was having panic attacks or just regular arthritis...I forced them to give me an ANA test and it came back positivie
algerianhistory 1 year ago
thank you for this useful video im having a bad time at the moment and feel very lonely xx
nab105 1 year ago
help i have been telling doctors for three years that something was wrong they just tild me i have lupus but they wont tell what to exspect as a matter of fact they said go on the internet im so unsure whats going to happen now am i going to have a heart attack or a stroke im 45 and i cant get doctors to act on this i see one then they tell me to come back in a month or two i wonder how long it took you to get them to take you seriosly
livingwright45 1 year ago
help i have been telling doctors for three years that something was wrong they just tild me i have lupus but they wont tell what to exspect as a matter of fact they said go on the internet im so unsure whats going to happen now
livingwright45 1 year ago
@livingwright45 The best thing you can do is to find a support group for people in your area w/lupus and ask for recommendations by word of mouth. I had a major run-in w/my own rheumy. He refused to keep me on the only drug that was slowly the progress b/c I happened to be dx'd w/ a retinal eye disease & the pill taken at the dose to be effective against lupus caused retinal damage. I sat in his office w/my guide dog & asked he thought the pill would do- make me blind? I was THERE! ROFLMAO!
PaisleyPlace 1 year ago
I was diagnosed with this yesterday. The first sign was that my fingertips started bruising and turning blue and purple. My fingers then got purple lesions in a span of a week. They say it's SLE lupus. I am in so much pain, it's unbearable at times. My parents refuse to understand it and are not supportive at all. Now, the both of my hands are now swollen like balloons. I have a positive ANA. The other sign was flu-like all the time. Thank you for this video.
freakypeoplehunter 1 year ago
i have days like explained @ 3:42 to 3:55. my own mom believes im faking having lupus because of that. ive had it for 7 years now(im 22). one of my big problems is fevers and seizures(my mom thinks i fake those too).
im glad i found this video and glad you posted this Michellemim. Maybe just by watching this one video, my mother can get to understand this disease more and how we cope with it.
dYnAsTyDA1st 1 year ago
r
i remeber when i got depression...people hated me then. "fat and "lazy" were my middle names then I almost died
TheSunIsBlack 1 year ago
@TheSunIsBlack I can totally relate
algerianhistory 1 year ago
for the past 3years i have had hair loss there are may times that i just feel like sleeping.
amy72855 1 year ago
Thank you so much for putting this out. I have systemic lupus and I find it difficult to explain to people
Poetyk1 1 year ago
Thank you for you time in making this video. I was being treated for "undiagnosed lupus" there was no treatment at that time not sure if there is now or not. So the Dr was treating "my symptoms" after switching Dr's I found out that I do have MS so I do understand some of what you going through and I am sorry I pray for a cure for all of us. ♥
ljchurch93 1 year ago
Comment removed
ljchurch93 1 year ago
Thank you for your time. It was very very helpful. Bless your heart
-German
germandrade 1 year ago
my best friend has lupus and has had it for years. she's only 20 now and was diagnosed when she was 16. It's hard to live with, so if you know someone who has it, love them, understand them and be there to support them over and over again.
Promthanius 1 year ago
This has been flagged as spam show
I recently was diagnosed with Lupus. I first noticed when I was in the military in 2004. I went and asked the doctor about it and he said it was no big deal, just marks. 6 years later I am still strong but the marks have covered my body, except for my face and legs. Even my tongue has Lupus now. I wish I had been diagnosed correctly when I first made an appointment with a dermatologist in 2004. Fortunately I don't feel sick, at least yet. I still go jogging at least twice a week.
kc10man 1 year ago
I recently was diagnosed with Lupus. I first noticed when I was in the military in 2004. I went and asked the doctor about it and he said it was no big deal, just marks. 6 years later I am still strong but the marks have covered my body, except for my face and legs. Even my tongue has Lupus now. I wish I had been diagnosed correctly when I first made an appointment with a dermatologist in 2004. Fortunately I don't feel sick, at least yet. I still go jogging at least twice a week.
kc10man 1 year ago
Please watch this video, there is research done for fighting lupus with 100% success rates
youtube.com/watch?v=BVn-jmCi4zI
karinachabela 1 year ago
traslator google, portugues x ingles, cure of lupus brasil.
Minha esposa ficou na cadeira de rodas a beira da morte, teve nefrite e varias doenças secundarias, fez quimioterapia, perdeu dentes, e hoje esta curada, leia a historia dela, talvez possa te ajudar mesmo, a dieta talvez seja a solução para o seu caso. site: curassecretas.blogspot.com curassecretas@gmail.com Não deixe de ver o site! curassecretas.blogspot.com
curassecretas 1 year ago
You are a very pretty woman.
bradass100 1 year ago
Great video. I have learned lots of information from you. Keep up the good work and try to stay positive.
mariandtita 1 year ago
i just want to say a big thank you for ur post im a 29 year old woman i told i had sle after i had my 1st stroke( ive had 2 in a year) .They have now found i have fibromyalgia and a pfo , im a single mother of a little boy age 22 monthes and in the uk most of the doctors dont think lupus is a real thing only my neuoloigist and my gp so i had to leave my home and move in with my mother to help out when she isnt in work and helps me when im in a bad flare up or trying out new drugs to help . x
annamarie543 2 years ago
i would like to know does lupus affect ur eyes.
tina7ful 2 years ago
@tina7ful Yes, but it's rare. A more likely culprit would be the meds taken to treat SLE. But this too is rare. Steroids and Plaquinel are the main SLE drugs that can affect the eyes. It is vital with SLE, before starting treatment on certain meds- to have a baseline eye exam, and in particular- a "visual field test" done by an opthomologist. Then, annual exams of the same to monitor any changes. Call your treating physician immediately should you develop any symptoms or changes.
BellaJanae 10 months ago
@tina7ful Yes, but it's rare. A more likely culprit would be the meds taken to treat SLE. But this too is rare. Steroids and Plaquinel are the main SLE drugs that can affect the eyes. It is vital with SLE, before starting treatment on certain meds- to have a baseline eye exam, and in particular- a "visual field test" done by an opthomologist. Then, annual exams of the same to monitor any changes. Call your treating physician immediately should you develop any symptoms or changes
BellaJanae 10 months ago
I have discoid Lupus it get's so bad that I do not leave the house as people stare and point at me. Even at the supermarket they will change lanes to avoid me. I take steriods but hate what they do to me. Quite by accident I had a gum infection and my dentist prescribed me an antibiotic, my Lupus dissapeared for a month, no moon mace no weight gain, I cant wait to get back to the UK to find out the name of this medication. I will keep you posted.
silverfox173 2 years ago
Thanks for putting this up. I also have lupus i have SLE. i could never do what ur doing. i got mine almost 2 years ago i was 11 i was pretty young to get it. I was really upset & mine was BAD some of the doctors told my mom i wouldnt survive so it was really scary 2 but it changed my life! i hope urs is getting better. the steriods were horrible i lost all of my friends cuz of what i looked like + i fractured my ankle & have a bone fragment in my knee cuz of the rapid weight gain. thanks again
lexitroihannah 2 years ago
BTW, thank you for posting this video, I hope your soon able contain your lupus to a relatively manageable state.
nabiji 2 years ago
I recently got a diagnosis ... I'm a 22 year old male. My ANA levels range on average between 400 - 650. X>2560 during 'flareups'. I've had over the years different symptoms however for the most part I've managed unknowingly without any medication. Recently I've been experiencing photo-sensitivity, and recently had a very obvious 'butterfly rash'.
My question is, anyone else experienced intense and totally random feelings of extreme anxiety (panic)? Has medication like Panqueline helped?
nabiji 2 years ago
my mother was diagnosed with fibro myalgia first then a number of other things now lupus....she has very bad flare ups that began at her feet now her mouth and face....please keep us in your prayers and i'll do the same!
Lacey1Spytfiyah 2 years ago
great video!
kayleewyatt 2 years ago
Thank you for posting this video. I think I might have Lupus (I've been diagnosed with fibromyalgia but I haven't had blood tests so they don't really know what I have), and I don't really know how to bring it up to my doctors (They are nincompoops who don't really want to treat me at all). Any ideas?
loserella55 2 years ago
i have lupus a couple of months ago i started to have joint pain. at first dey said it was drug induced and i beilive and pray dat it is. acne medicine induced my lupus becuase no one in my family has this. im scared but im hopeful im on steroids and i think the drugs demselves are making me go insane. i was perfecttly healthy before never missed a pieriod never even gotten sick. am i going to continue to get more symtoms like liver heart lung problems?
belladiana09 2 years ago
I'm sorry about your diagnosis... Try not to be scared... easier said than done, I know but stress can bring on symptoms. It's hard to say how things will go.. Lupus is very unpredictable and no two patients are alike as far as symptoms go.. some people live long and have mild lupus, some go back and forth and others get organ involvement, etc... The best things to do is to stay away from the florescent lights and the sun and live as healthy as possible so you'll be as healthy as possible.
Michellemlm 2 years ago
How often do men diagnosed with Lupus?
Does doing excises, having enough sleep daily and healthy diet help control lupus?
sonofmanchu 2 years ago
@belladiana09 I was diagnosed approx 10yrs ago already in the mod to severe stages. I had not only Lupus (SLE - worst type of lupus), but Sjogren's disease too. Lupus & Sjogren's are generally diagnosed together. All my aunts/uncles (maternal/paternal) have some form of autoimmune disease. I'm the 2nd of my generation to be diagnosed, 4 others follow me w/diagnoses, some w/Lupus, Lupus/Sjogren's, & Rheumatoid Arthritis. I hurt all the time w/no relief. Pain sometimes is tolerable, but never gone
PaisleyPlace 1 year ago
The one thing I found that may have helped prevent my ANA titers from rocking back & forth was to not take anything for the joint pain for at least 3 days prior to my visit where they were doing a blood draw for the ANA, which was every week 2-3x a week for 5 - 1/2 mos. W/o the ibuprofen, my titers showed in the high markers for lupus w/ few if any dips to claim the contrary. It also allowed the findings of Sjogren's, & I'd come out of remission. Arthritis was everyday life for me. It was lupus
PaisleyPlace 1 year ago
I have lupus and it took a long time to be diagnose, I had everything , and all the doctors keep telling me I had HIV or cancer , but tests prove them wrong, until one of them decided to test me for SLE , and was + and my VDRL + this is being a long journey , but overall I tried to not get streess and exercise whenver I can. so I understand and support you.
imelda1774 2 years ago
I think I have discoid lupus. I've been getting these flaky ring like lesions on my nose and cheeks all throughout high school. My scalp also gets very flaky. I think I should see a derm. Thanks for the video.
Mahhbadd 2 years ago
I had something similar on my face. At first it started like a small dark bug bite. Then it grew and the flesh began to "eat" on itself and flake... I don't know how to describe it because I was 11 at the time. It sounds similar. Mine was red dark and sore. I had to have the spot removed. I went into remission afterward. Luckily my family doctor talked to her friend doc, and he saw me and decided "hay I wonder if thats lupis" and so began my 2 year diagnosis.
Stay out of sunlight.
**hugs**
SashaKuroi 2 years ago
Keep an eye on your skin, avoid going out in sun at peak times. That really helped for me, but its hard to say with Lupis because it can randomly start up and go back into remission.
Discoid can become systemic as I recently found out. >.> Goodluck to you and I hope you stay lucky for as long as possible.
SashaKuroi 2 years ago
Thank you so much. I'm not alone.
I actually have a job where I'm out
in the sun all day but I make sure I wear
a cap. I'll try to see a derm cause it's annoying.
Yeah I heard about that too. I'll try to keep myself
healthy. Thank you. Good luck to you too.
Mahhbadd 2 years ago
I hate this, but the fact is I have cried watching your videos. My wife has been bounced around so many times. She takes so many medications. We came to the conclusion that she has lupus. But, an expert looked us in the eyes and said "No you don't have lupus, but when you have more symptoms let me know." Really, I am so tired ;my wife has lived with this for so long; and someone is going to say to us WHEN you have more symptoms let me know. I don't know what to do anymore. I cry that's really it
BringIt2TheMax 2 years ago
Its OK TO CRY. BUT DONT GET TOO CAUGHT UP IN IT. Just let it GO. I have had Lupus for 15 years. Took me 9 years to get diagnosed. I NEVER HAD A POSITIVE ANA, But I had ALL 9 Symptoms the wole time. Dr's at the Medical College of Ohio finally threw up their hands and diagnosed me.
Ladyshystar 2 years ago
dont worrie they found a cure its ok now millions of people are ok now
yomamastank808 2 years ago
Is Lupus related to Lime Disease?
itsme123445 2 years ago
It's not BUT, often times the symptoms are similar and Doctors will check you for lyme disease... Lupus can mimick many diseases and Lymes disease is on of the many.
Michellemlm 2 years ago
Okay, I made the connection because you said the Lupus symptoms can be evasive, and Dr.'s have a hard time diagnosing it... just like Lyme disease.
itsme123445 2 years ago
@Michellemlm That's ironic though because Lyme disease is like Lupus in regards to symptom inaccuracy.
TheBatchGuy 1 year ago
Also, I want to say too, there have been cases where a person had lymes and lupus... so it's not impossible to have both.
Michellemlm 2 years ago
I have skin lupus. My chest and back are full of blotchy, lumpy redish bumps. I was adviced to stay out of the sun.
Being raised on the Jersey shore, it's tough to stop swiming in the ocean.
The question is - will this disease eventually go internal?
fpm229 2 years ago
HI... I'm going to email you some links... There's a small chance of discoid lupus evolving into SLE (systemic) lupus.. it's small and they aren't sure why some evolve and others don't.... staying away from things that flare you, sun, floresent lighting, keep stress down, etc... is always in your best interest. lupus foundation of America and Alliance for lupus research are good sites to visit as well as mayo's website. I hope that helps and I'm sorry you have to deal with this. Best wishes.
Michellemlm 2 years ago
Hi and thanks for your quick response. I was diagnosed with skin lupss about 10 years ago, when they performed a biopsy. It hasn't affected me physicaly, other than the abnormal skin rashes. I really don't know much about it, but.
I welcome any info you can pass on to me. Thanks again.
fpm229 2 years ago
You're welcome! I just sent the email but also, for others, I am putting some links in the description box as well. Also, the google search term I used is:
"percentage of discoid lupus evolve into sle lupus"
Which has a lot of informative sites in the search results. Hope this helps and thanks for the question... It's a good questions and will hopefully help others too!
Michellemlm 2 years ago
Also, to: ThatCriminal, I want to remind you too that children get lupus, young children. I myself have had it since I was six. I had rheumatic fever & due to being genetically predisposed to it, they believe that is what triggered it, (made it active).
I'm sorry your cousin has Lupus but I'm more sorry that anyone would blame her for having it as you can not catch it no matter what... not even by blood exchange. I really hope you'll read up about it & educate others in your family about it.
Michellemlm 2 years ago
it's the exact opposite .. Lupus is an over active immune system.. so active that your antibodies multiply do to a genetic issue... they then become so many that they attack your body. It is not something you can catch. It is not an autoimmne disease like hiv/aids.. it's the exact opposite .. Lupus is an over active immune system.. so active that your antibodies multiply do to a genetic issue... they then become so many that they attack your body. It is not something you can catch.
Michellemlm 2 years ago
Lupus is a Connective Tissue Disease. For example, Crohn's disease is a connective tissue/autoimmune disease of the digestive system, or scleroderma, sjogren's, even psorisis, fibromyalgia, rhuematory arthritis.... All of these are connective tissue autoimmune diseases just like Lupus is. they are no contagious in any way.
Michellemlm 2 years ago
im not sure why you deleted my text comment, but my cousin has lupus.
she caught that shit having unprotected sex.
ThatCriminalXIII 2 years ago
I'm sorry I deleted your comment... but I'm not sure where you heard it's contagious.. Please look it up so you can verify what I'm saying... You can not "catch" lupus.. especially from sex. It is not an STD in any way shape or form and is not a virus. I thought you were being mean when you left that comment but now I realize that you really think it's contagious. It is genetic, they have found that people are genetically predisposed. It is not an autoimmne disease like hiv/aids..
Michellemlm 2 years ago
Please see both comments, as it took two comment spaces to reply to your comment. Thanks.
Michellemlm 2 years ago
I want to thank you for doing this video. I know we have talked about it and it is so true. So many people judge us and it is unbelievable yet hurtful. Your swelling isn't too bad, the worst part is you probably know what is going to happen. When I first went through it I didn't know what would happen, and it was worse when I knew it was going to happen again
oreolover766 2 years ago
Thank you.. you're right.. I think knowing what is going to happen.. it bothers me a lot more.. the first time, I didn't really know what to expect.. didn't understand what was happening.. because it was more than the moon face, it was all over my body.. and it hurt... ths time, it's better in some ways that I know, not so good in others. ;) Thank you and I wish you THE very best with EVERYTHING..
Michellemlm 2 years ago
@Michellemlm my 13 yr old son is being tested for lupus. can it not show up for years on his blood test ?
babyj1996 1 year ago
You amaze me everytime and yet, it doesn't surprise me.
Blessings.
feawguita 2 years ago
Thanks feaguita, I'm hoping this vid will come in handy for those new to the disease but also their family and friends since we all go through that ever too long period of "but you look so good, how can you be so sick" thing. It's not the best, but I hope it helps. Thanks to you to for such kind words and for being so supportive. Big hugs to you!
Michellemlm 2 years ago
Thanks Michelle. Lupus is so difficult to diagnose and to live with. Your video illustrates it so well. Thanks for your bravery!
gsteviec 2 years ago
grate video. i have lupus and cateracts glacuma and atherites.could i realy get anothe diseass?
salcedo199 2 years ago
Over time, like kidney disease, sjogrens, usually it's mild secondary diseases or conditions... Lupus doesnt' like to travel alone.. some people only get Lupus and reynauds and a skin cond, some go on to get mixed connective tissue disease... Early diagnosis helps, proper treatment is a good way to prevent further damage.
Michellemlm 2 years ago
Want to say, it's usualy mild unless there is organ involvement .. and organ involvement is common in lupus.
Michellemlm 2 years ago
hey mom this is a really true and good video. you have such different symptoms then a lot of your lupus friends. im happy your doing these videos i think its going to help a lot of people understand more about lupus :). and hopefully create more research leading up to a cure or treatment. well i love you lots :)
MyMelvinMelvin 2 years ago
Again, Youtube comments are only taking about 10% of the time.. not sure what's going on. My daughter tried posting a comment 8 times or more.. Anyone else having a prob with it?
Michellemlm 2 years ago
hey.. My comment isn't showing up. I'll wait a bit and comment again if it doesn't show up. :(
MyMelvinMelvin 2 years ago
Great Job...I enjoy each and every one of your video's.. xoxoxoxox
puglover50 2 years ago