My Lupus Story (World Lupus Day | May 10, 2018)
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- Опубликовано: 8 сен 2024
- Hey guys, wanted to share my lupus story to hopefully raise some awareness around World Lupus Day, this May 10, 2018.
I forgot to mention other symptoms that I experience;
- I frequently get bronchitis as a result of my poor immune system.
- I get frequent cold sores and mouth ulcers.
- I've experienced significant hair loss in the past when I first got diagnosed.
- Anxiety and depression have been linked to lupus.
I also wanted to share that it can get better!
My tips/advice for managing my lupus:
- SLEEP
- Drink lots of water
- Exercise
- Eat clean! Avoid sugar and alcohol!
- Wear sunscreen!
These tips won't cure the problem, but they'll help you create the best environment possible for your body to heal itself!
Please donate to help find a cure - every bit counts!
Donate to find a cure on Lupus Canada;
www.lupuscanad...
My Lupus Story on Lupus Canada;
www.lupuscanad...
I was diagnosed at 16 and I am now 50. DONT give up. It effects everyone different.
Are you on Plaquenil and prednisone?
@@mail2vw Yes
@@Chippy88 are you off and on pred or continuous?
@@mail2vw Continuously but I’m on a very very low dose for the past for The past 20 years.
@@Chippy88 good, keep it up!
I was just diagnosed less than 48 hours ago. I have had joint pain for maybe about 6 months or so. First my knee super swollen, then my elbow, my wrists, my ankles, and most recently my fingers. But I thought it was just being on my feet all day since I work at an animal hospital. I’m grateful I was told with the course of 3 weeks, I’ve been seeing others that that had been diagnosed over the course of MONTHS. When I left the doctors office I was with my mom, I just started to cry... because I know with lupus you can end up being in the hospital for days, and I never have been dependent on meds... however my dr was very positive, I need to do more studies on lupus. So this is just the start for me... just turned 21. :)
I'm on the hunt to diagnose lupus right now. I have the malar rash, the fatigue, joint pain, loosing so much hair, lack of appetite, sun sensitivity, massive pain in my gut, and breathing just how you discribed it. So far we just have my ANA. It was 1:80 but was ignored several months ago, as lupus wasn't on our radar. Now my doctor wants to do it again when I'm flaring to see if it changes. I feel like I'm a ticking time bomb waiting for me to go off! Losing my mind.
We're also pretty sure there's either ulcerative colitis or celiac involved. We get those tested in December.
I'm a runner and had a half marathon paid for and planned for two weeks from now. Had to back out today. I've been sick too frequently to train, and the sun is now setting me off. It's breaking my heart, and scaring me that I won't be able to run long distances for much longer.
To all of you guys going through this insanity, stay strong! You're not alone, even though it really feels like it. As my husband keeps reminding me, one step at a time!
I did a triathlon while I was flaring, don't give up hope, anything is possible! Lupus doesn't define you :)
Hello Natalie. I was diagnosed with Lupus in 2011. I am still learning more and more about living with Lupus and have made major life changes to try to avoid repetitive flares although I have had a few (currently in the midst of one at this moment). I hope you received good news, but in the interim it is paramount that you take care of yourself. Invest in hats and sunblock should you decide to run / jog or walk. The sun can do terrible things to people with Lupus (as well as UV light) Avoiding the sun still is heartbreaking for me. I love outdoors and the beach. Anywho, Suntegrity makes good vegan, non toxic products. I sincerely hope you will be spared and NOT diagnosed with this disease.
Hang in the there Lupus is a serious autoimmune disease. It took them a long time to finally diagnose me. I pray the very best for you.
Thanks for the video I'm fighting lupus myself keep fighting I'll keep you in my prayers. . .
Thank you! Likewise, get well soon
My mom has both RA and Lupus. Your symptoms just sounded so like my mom. I just wince even hearing about your "sausage fingers". I have been immobilized several times in severe pain to where my husband has had to help me shower. Or help me walk. Just horrible. I am currently undergoing testing for Lupus now. I also had to quit my waitressing job because of this. I have Raynauds and Celiacs which are also autoimmune. My mom is my biggest hero, she works full time and has been in remission for awhile. Im glad you're so positive about this in the video. Xx
Raynauds is a lupus symptom
I have had a ton of symptoms for 3 yrs now, but all started in 2020 when PANDEMIC hit. No way to link my dozens of symptoms to autoimmune disease, and Healthcare crisis put everything on hold. Finally, now it's mid-2023 and I'm in process of getting Diagnosis. My symptoms have only worsened and most organs major impacted. I'm praying it's not too late in organ damage. Good luck to you.
OMG.......your story ring so true with mine!!......THANK YOU FOR SHARING....GREATLY APPRECIATED!We are NOT fighting with LUPUS.....we
Are living with LUPUS gracefully! My kidney and liver is being effected by now.......AWARENESS NOW of LUPUS!!
I totally understand were you're coming from unfortunately. It angers me because the Doctor's suspected an autoimmune disorder in my early 20's but i was never tested it was brushed off as anxiety and depression and all along i had Lupus. I found out recently i had 4 positive ANA tests with a couple different types of arthritis and I'm in stage 3 CKD and it's also affecting my liver. I have IBS-D, horrible joint pain, hair loss, spine pain, cysts on ovary and thyroid problems, swollen hands and feet and always in extreme pain. I never know what tomorrow will bring but i know pain unfortunately. My neuphrolgist is the one who found and took the time and i didn't even list all the symptoms to many to list actually. It's to the point were my kidneys are declining so bad tomorrow they're scheduling me to have a kidney biopsy so it shouldn't be long before that's done because he actually suspects Lupus nephritis and he wants to rule out anything else and i also came back positive for a connective tissue disorder and my poor joints knees sound like snap crackle pop they said i would need hip replacements one day because of the osteoarthritis and I'm 50 i will be 51 next month and i can't begin which I'm sure you know what a horrible disease this is especially when it affects you're vital organs. I've already had 6 major surgeries and my rhuenoatologist wants to do chemo and i told them i will feel more comfortable to let them do the kidney biopsy first for the last final diagnosis which i pray that my kidneys haven't declined anymore because each time they do bloodwork the numbers go down instead of up and my inflammation markers are off the charts. But yes after 4 positive high ANA tests and it's affected my kidneys and now my liver they called me after my recent bloodwork on Oct 20, 2020 so i understand what you're going through and i pray to God that he stays true to his word my kidney Dr. He said he's going to do everything he can to save my kidneys and its to the point now were I'm always in so much pain it's hard for me to do just the simple tasks. So as much as i hate getting the biopsy done it will actually be a relief so that they can at least find a treatment plan that works for me and i just pray that my kidneys and liver gets better and not worse. It's affecting my vision very badly as well and i blame the doctors for not testing me back when i was younger having so many kidney infections I'm anemic and take iron and vitamin D-3 for a deficiency and also liquid potassium and i would advise anyone when it's affecting you're kidneys not to take any advil, aleve, especially motrin and even some antibiotics and its amazing how many different meds can make you're kidneys worse and i can take tylenol and I'm on 2 different blood pressure medications so you aren't alone i saw you're comment and my heart goes out to you because i understand you're pain. Best of wishes to you and stay strong and God Bless you and you're family.
I’m really glad I found your video. I am waiting to hear back from my doctor whether I have lupus. This has been something I have been struggling with for almost 9 years so I hope I finally get a diagnosis
I find out if I have lupus & arthritis on june 17th im so nerves... I been having a lot of her symptoms.. How you feeling today? I pray hope all is well with u🙃
I PRAY ALL OF YOU GUYS THAT HAVE LUPUS GOD BLESS YOU ALL🤍🙏🏾.
I don't have this but one of my friends do it hurts to see her how she is rn. I'm trying my best to learn about this. All of your strong souls will be in my prayers💕💕
Getting educated is definitely a good place to start! Wish her all the best!
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You are not alone. Hugs from lupus patient.
hi. i’m 14 years old and yesterday i got diagnosed with lupus. it’s a really scary process right now and i’m pretty confused. all my doctors thought i had lymphoma (cancer) because my grandma had it and my lymph nodes on my left side are extremely swollen. thank you for sharing your story, it’s very helpful.
Stay strong ❤️❤️
It's an old video but either way I just wanted to comment on my frustration... I was diagnosed with fibromyalgia in 2015 but I think the doctor used it as a escape goat. The "flares" are getting worst and the symptoms are piling up, I feel like I'm loosing myself. It started with back pain when I was 13-15, that came rarely. When I turned 21 thou it was enough I couldn't mop or do laundry. Then my knees started hurting, if I tried to kneel down it would hurt as if I was kneeling on my bones. In 2015 my backpain got so bad I felt like I couldn't breathe, went to the ER thinking it was asthma, imagine my surprise when the doctor ended up saying it was fybro and he could do nothing, after almost a year of tests and appointments... Then it lessened for a little, then between 2017-18 the butterfly redness appeared, sours inside my mouth and some rashes, but, in August 2018 my hands started numbing and cramping, I couldn't open doors, jars or even wipe my own behind... After more tests they repeated the same, "it's fybro". The last new symptoms have been fatty liver, basically my liver swells for no reason at all, my liver markers are normal my legs have tingling like pins and needles, numbing and the soal of my feet hurt in the morning as if I had dance all night long, and I'm having episodes of "fried frog" were it's even dangerous to go outside cause I can't process thoughts like "green light means crossing". Of course my pain has increased so that nobody can poke me anywhere cause it hurts, my back hurts so bad I have to work laying in bed half of the day, thank God for working from home, and I use a cane to walk more than 3 blocks, but if it goes beyond 30min I may need a wheelchair... I don't know what to do anymore and I can't believe this is fibromyalgia...
I was told I also had fibro. My body got whole lot worse. I kept pushing for answers, doctors and specialists. Talking to friends and family. I knew something else worse was going on. I'm still getting figured out, it will be 3 yrs this month.
I did change insurance. I wouldn't stop searching and pushing for answers. Even if you change insurance. Keep going until you get correct treatment and diagnosis.
Possibly lupus for me.
I pray to God that you don't have Lupus but what you're describing sounds more than fibromyalgia so i would get more answers and tests if i was you just saying. Best wishes to you and prayers you're way.
I just wanted to say I give you a lot of credit for posting this video I applaud you for all the strength and courage you have to never give up live your life to the fullest never give up on your hopes and dreams and always remember no matter how hard life can get sometimes God gave you this life because you are strong enough to live it everyday above ground is a blessing and I hope you have many more blessed days to come your way 😊📿🙏🏻💪🎗♥️
Really needed to hear this today. Thank you so much ❤️ all the best to you.
I'm really glad I try my best to give support and kindness to others as much as I can I feel like we all need some positivity especially nowadays with a lot going on 🙏🏻
@@davebraho7145 world definitely needs more kindness!
I definetly agree I really enjoyed watching your video 😊
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Thank you SO much for sharing. I have been on a health journey since summer of 2017. My career has been put on hold. Definitely starting to put autoimmune disease puzzle piece together. Your video has brought me comfort.
thanks to share lupus story along with us...i have been battling since 2000.. I would like to make a video to narrate my journey..
Me to I'd like to make a video as well so people are more educated on this disease.
Thank you so much for sharing your story. I just recently found out, that I tested positively for Lupus. Your information has helped me a lot.
I've had lupus forever. Last week my hair starting falling out and I have a strange ulcer looking rash on me everywhere. Constant slamming headache. Here we go again. Different symptoms, same ol lupus.
Thanks for telling about your Lupus. It's encouraging that you've attained remission. Keep up the good work. We love you. Thanks.
Thank you for sharing! I'm seeing a Rheumatologist tomorrow. I've had so many tests. because my dr originally thought I had chrons due to mouth ulcers and digestive issues. But no inflammation in my colon. I do have high ANA 1:320, fatigue, joint pain, ulcers, gi issues, and I'm super beat if i'm in the sun too long but I also react to UV rays from tanning beds.
Best of luck to you 🌞
Hi Abbie,what reactions do you have from Tanning beds?
@@TheeLifted-Bodhisattva hey :-) i get red raised rashes all over. My skin itches for days but not due to a burn. It's weird.
@@abbiepaeno4718 Thank you Abbie . I also get a severe reaction from Tanning Beds. I had a grand idea that they'd be better than the sun or rather I'd have a better experience since the sun literally made me so ill. Thank you once again . Godspeed to you and your family for health and happiness.
I was just diagnosed with Lupus and am very confused but your story to me made a lot of sense. Thank you
Hey!!!!!! My story is similar to yours only I have odd numbness/tingling down both sides of my body. My CT scan clearly shows Joint damage. My RA factor/ANA came back negative for RA or lupus. Getting Re-tested a second time. I'm in so much pain my job is hanging by a thread. I was always an active person now I can barely walk far without having to sit. I went from a healthy weight to very slim. My bones hurt to move. It breaks my heart. My mental health is deteriorating because of my physical health.
Thankyou so much for sharing!! I've had lupus for 5 years now. Take care!!
True i know what you mean. Yes same with me . Ive been in sun light to. Yes all on me plus my spine and all
Thank you.I just diagnosed with lupus,in the middle of a flare,Lots of pain etc.
😥😥☘☘
Thanks for the info. I too, am a Lupus patient
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Thank you for sharing your story. I know what you went/are going through. I didn't get a diagnosis of Ehlers-Danlos/hEDS and RA and Fibro until 50. You're lucky you got a diagnosis young. You can protect your health now, for long term functionality. :) Best to you for a happy future.
You're exactly right because it angers me because when i was in my 20's i had so many problems and the doctors suspected an autoimmune disorder but i was never tested they just brushed it off as anxiety and depression and now that I'm 50 back in 2016 i had 2 mini strokes and so many seizures with no explanation why. I will be 51 next month and recently had 4 positive high ANA tests and have Lupus but it's to the point were it's affected my kidneys I'm in stage 3 CKD and now it's also affecting my liver and my neuphrolgists suspects Lupus nephritis so tomorrow they're going to schedule me to have a kidney biopsy done he said to rule out other things he suspects Lupus nephritis like i mentioned and he said I'm trying to save you're kidneys because the numbers instead of getting better they keep declining and it's scaring me to death and i have absolutely to many symptoms to list and also have a connective tissue disorder and my rhuenoatologist wants to do chemo but i told them i would feel better when the final diagnosis is made and i pray my kidneys and liver can be saved and they get me on a treatment plan asap because it's to the point were it's hard for me to do the simplest task and yes if it's caught early enough then they have a way better chance. But it's a nasty disease that they need to find a cure for asap and i saw you're comment and i totally agree the sooner it's diagnosed the better chances you have and I'm sorry for you i will keep you in my prayers God Bless.
@@angelsbutterflies6293 I'm so sorry the medical system has failed you until now. I wish the med establishment would mandate ANA testing at 20 and 40 years old. Women especially are at risk.
I pray for proper treatment for your medical issues and for your improvement. God bless you.
@@pkendlers Thank you so much for you're kind words i appreciate them so much!! You're correct and that's a very good idea they should mandate ANA testing and maybe people's lives wouldn't get to that point. It's so frustrating even looking back when you're young and people know they're own bodies and you have a Dr. Telling you it's anxiety and depression and it's absolutely absorb because if they would take time and do they're jobs correctly that's why they go to college to help us and then it's up to them to put the pieces of the puzzle together but some Doctors not all just don't have compassion and they don't care. I've ran across both types in my life but thank goodness that my neuphrolgist did more than anyone, it may have took him 2 years but he did and my insurance isn't the best it's changed 3 times but what can you do when you get to the point were you can't work and I'm one tough cookie but when it gets this bad without treatment this nasty disease will stop you dead in you're tracks. But the rhuenoatologist i see ( I've only seen them once) and going back but I've got to call and schedule the kidney biopsy today and even though I'm nervous and scared I'm ready to get it over with because when you get to the point were you're that sick i seriously need treatment asap and so i just pray it doesn't hurt and they're are no complications, but most of all i don't want anymore bad news. I dread going to the Dr. For that fact anymore but it is what it is and all i can do is pray that God heals my body because he doesn't close one door without opening another and i do believe that we all have a plan and a purpose for all of our lives. Thanks again for you're kind words and i wish you all the best!! God Bless you and you're family and i hope that you're doing well and better and I'm sorry for you're health as well may you feel better.
I've just been diagnosed. I've been afraid to really research it. I've also got Common Variable Immunodeficiency disorder so this was a double whammy.
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@@marieharris6646 um no we we're talking about Lupus.
I relate my hands are sausages too. Sending prayers. I was diagnosed as n 04. I am home bound
Thank you Katherine for sharing your story. I certainly can relate. I was diagnosed with Systemic Lupus Erythematosus in 1962. Eventually my Internist told me he believed I had this disease a good 10 years prior to diagnosis. It is still affected numerous organs. I'm seeing many specialists in regards to different organs. I am now 78 years old. I'm also a Canadian & live in Alberta. What province do you live in? Stay positive. Am praying for you.
I am in Ontario! Hope you are doing well!
@@katj0418 Thanks Katherine. Hope we could talk on the phone some day.
@@yvettenoel8333 While I appreciate the sentiment I won't ever be giving out my phone number from contacts on RUclips! All the best.
Currently experiencing my first flare up. This was helpful.
I'm glad! Get well soon. It gets better :)
I completely related to your story! Trying to explain or describe what the pains feel like is almost impossible. Except to someone who knows what it is like.
I hope that you are well & healthy now!
Keep fighting the good fight! ~M.R.
I think I may have lupus, still waiting for an official diagnosis but a few years ago apparently I tested positive because I specifically remember lupus coming up in the talk and now I'm showing many of the classic symptoms for it. As nothing more happened back then other then it showing up. Here's to hoping I get it sorted out soon
oh my... i'm experiencing every symptom that you had mentioned :( especially the hurting joints and the sudden redness i don't even know if i have lupus :( i'm scared
Hi I have been diagnosed with lupus erythematosus I'm waiting to see a specialist in August my mum had this illness and it was a shock to me as it took my mum's life at the age of 26 it affected her heart & kidney she must have been so ill I know now sort of how she felt I'm exhausted constantly my hair is falling out a lot too my mouth is very dry so are my eyes the pain throughout my body is awful suffer with both swollen feet life is tough plus I'm a single parent too which affects me greatly and more recently my little finger and ring finger up the side of my hand is numb I can't open packets or carry stuff been like that for the last few weeks I'm basically falling apart people say to me you don't look ill cos they can't see it but I feel crap all the time.
Also the pain under your jaw is your lymphnodes 😢 its a lupus symptom.
# I have the same simtoms too.i fund my lupus 11yers a go.thats when I gave birth to my 4th child .I am still learning about it. My husband thinks I am lasyz. Because I don't look ill.
@@Whats_Up_Chicken-Butt Very well said. If people could only walk in someone's shoes for a day they would change they're mind completely i can guarantee them that .
Hi I’m so sorry. I feel like i have lupus too my ana came back positive with lots of joint/bone pain but the doctors are saying I’m fine because the antibodies test all came back negative. Can you please email me I would really appreciate it if you could talk to me on how you got diagnosed. My email is aminabebeyc@gmail.com thank u 🙏
Hi Katherine! Fellow engineer here who graduated from Waterloo. Thank you for sharing your story! I hope you're feeling good and you're still in remission.
As of 2 months ago I started getting some symptoms but I haven't been diagnosed yet with lupus: bad shortness of breath & lung pain that cleared out after 4 weeks (it wasn't covid - got negative tests for both covid and covid anibody), tingling & pain in my feet; pain in my muscles and joins that comes and goes & positive ANA & dsdna tests. No swelling yet and I'll be redoing the lab work in a month or so. Can you share what diet you followed and what medicine the doctor gave you to treat lupus?
Hey Diana! Thanks for the comment. I responded to it in my newest lupus update if you wanted to check that out :)
Mine started from an early stage of carpal tunnel last december 2018..I still have an on going check-up and tests... my ana result is positive 1:40 speckled my rheumatologist can‘t say that it is lupus yet for now... i have to see cardiologist, endocrinologist and otolaryngologist..
Thanks for sharing your story. I have been struggling for a while now and I’m trying to get diagnosed. I was thinking ms but a couple things didn’t add up. I met with a neurologist yesterday and she thinks a systemic auto immune such as lupus. Hopefully I get some answers soon.
Sending you good vibes 💛
hope you get some answers soon!
@@katj0418 thank you! I am watching you update video now
Sad thing is that Lupus mimics other diseases so it's very important that you tell them every single systoms you're having. Best wishes to you and prayers .
@@angelsbutterflies6293 yep ive tracked everything since February! its not Lupus all my tests came back clear. waiting on an mri
thank you!!
@@AllThingsAlexa You're more than welcome and thank goodness that you're not one of the ones trust me it's no way to live it's really hard. But I'm so happy for you i really am. Take care of yourself and best wishes and God Bless!!
@3.35 and before: dry pericarditis symptoms. Bending over us better, out of breath etc, jaw pain...reminds me of me ! OMG, i had a 3 day flare lasr summer after being in the sun with a friend who wanted to take some heat abd light. I came back home scratching after a few hours ans ALL my joints had a fever. 3 days in bed, I thought that i was becoming crazy, in so much pain. It was like i had a hammer striking all my joints for 3 days. @5.35 I work with a computer and holding my mouse somethimes becomes impossible with my right hand, wrist is painful. But im not doing anything with my left hand, and it is the same... @7.20: not functional, been there too :/ Congratulations on your remission, fantastic news! :)
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Thanks for sharing your story!
My pleasure! ❤️❤️
I have lupus too currently on pred, hcqs and mmf
LetsGoStylish me too! I am on prednisone 100 mg! What is mmf?
Alyssa Ahearn 100 mg why so high? Mycophenolate mofetil or mmf is a immunosuppressant drug commonly used in treating lupus nephritis
Hi Katherine I was just diagnosed with lupus My mom HAD Lupus yes I said HAD Lupus she went to see a doctor at a hospital in Mexico.. he put her under treatment which lasted 4 months.. she started feeling well within a week all her symptoms began to disappear. She did a follow up appointment at the end of her treatment with her US rheumatologist he ran the tests again because she insisted she was healed and he said lady Lupus is a lifelong illness with no cure.. he ran the tests again to prove her wrong. Guess what! No Lupus!! I’m going to Mexico to start the treatment if it works for me. I will go in every single channel to tell everyone..I am planning on starting a blog when I start the treatment.. if it works I will make it a life long goal to help everyone!!
Diana Nielson Hi Diana, could you please share where is that clinic/doctor in Mexico? My wife was diagnosed with lupus and I’d like to take here there. Thank you!
Was this Doctor Gersons therapy? :) I am a raw foodist now due to Lupus and its been the ONLY way to put most of my symptoms into remission :)
Well that's great wish you , get, back with us and let us know!!! Thanks
You are such an inspiration! Ty!
i have been getting infected again and again. i got typhoid fourth time in this year. doctors keep doing blood tests and all but at the end there is no specific cause why it is happening again and again even i started doing yoga and my multivitamins but still i feel so sad like the main root is not being diagnosed or what? it cant be in my head right?
I’ve been dealing with a wide variety of things. I don’t know if they are related or just a bunch of other issues. I have Hashimoto’s thyroiditis and have heard of you have one autoimmune disorder you probably have at least one other. Anyway, I constantly get skin infections, utis, and vaginal infections. I always just feel so drained. I wake up with swollen fingers each day. If I’m out in the heat for a bit I get over heated and feel faint and nauseous. I get random aches all over (could be weight related idk) I was dry heaving everyday for a few weeks, it’s not happening everyday now but still happens a few days a week. Last bloodwork I had done my gfr (kidney function) was 58 which is slightly below normal. Does lupus cause any of these things? I’m feeling lost and frustrated that it’s all happening at once
And I currently have trigger thumb
I get the SOB, feels like my ribs are tight into my back, diaphragm, midsternal. Experiencing now, on the way to work. My ANA was positive this month and speckled. However, crp and see rate are fine. It's terrible.
My doctor wants to recheck my ANA in 3 months ...but my flares are getting worse. :(
Just found your channel. l have lups .I have the one that affect my skin.how are you feeling. now.
I just posted a lupus update if you were curious still! Thanks for your comment!
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Thank you for this video it's very helpful! Do you mind me asking what your ANA test was? Mine is 1:80 and the lab considers it negative. I'm also from Canada.
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I'm so sick, what was the test that finally determined lupus?
My ANA factor, RA factor, and white blood cell count were giveaways! In addition to my giant swollen, painful joints, fatigue, hair loss, cold sores...
@@katj0418 was the white blood count high or low?
@@Sararamos89 Mine is extremely low.
How can i get in contact with you? I am getting tested for Lupus now. You are the first person i heard of that has mostly the same symptoms as me. Hope to get in touch with you.
Warmest regards
🌸🌸🌸
Contact through here is fine
Would it be possible for lupus signs to be mistaken for RA and Fybro
That is probably a question for a doctor. I have no idea. All the information I share about lupus is anecdotal.
Disgusting how the medical system avoids any attempt to diagnose autonomic diseases, until patients insist on a simple ANA test!
Do you have issues with circular red skin rashes that slowly spread all over your body? I don’t go out in the sun and I’ve been experiencing this. Going on 2 months now and these horrible rashes seen to be overtaking my skin. Before this even happened I’ve spent years suffering with joint pain which the doctors thought was fibromyalgia and chronic fatigue and now this I do see a rheumatologist on September 7 and I am scared. I have tried everything to get rid of these rashes but they keep multiplying it started off with one single circular rash on my thigh that was itchy and it would have like little blisters that would come up and pop and weep. I have been to two different doctors and one said possible fungal infection and the other one said an allergic reaction which I have done nothing different but now that they multiply they’re thinking outside the box so to speak and believe it is related to autoimmune now and want me to go to the dermatologist and see my rheumatologist anyway I was just curious if you experienced skin issues during your flares. Even when you don’t go out in the sun. Thanks and God bless.
No I don't actually, no skin/rash issues at all. I mainly have joint/bone pain and swelling. I get cold sores more frequently and have trouble breathing. I've also lost large chunks of hair in the past. I'm currently in remission, I think because I've been consistent with my treatment (I never miss a pill) and I try my best to take care of myself. Lots of sleep, water, no refined sugars or alcohol help. Take care, hope you get better soon.
Katherine Jarzecki Thank you for replying 😊 My RA appt. is on September 4. I’m praying for the best. Hopefully they will figure out what’s going on. I’m also losing tons of hair as well , but I’ve also been stressed. God bless and and again, thank you. 🙏🏼❤️
i also have rashs all in my legs towards my back .. its gotten worse when heat hits me it spreads more and shows more
Katherine Jarzecki When you have trouble breathing, have they checked for a pericardial effusion? Apparently lupus is a common cause for it.
@@TheAmtwhite They checked my heart - everything was okay there!
What meds are they giving you?
I was prescribed hydroxychloroquinone - been taking it since 2016!
@@katj0418 they are going to start me on benlysta. I’m really nervous.
@@mandoc7102 I haven't heard anything about that medication - probably best to ask your doctor!
@@katj0418 thank you
Why don’t you show how it is on the skin? Fed up with all talking no one shows it on a video
Because I don't have skin issues, get over yourself. Not everyone with lupus has rashes or skin problems.
No where in my video do I indicate skin issues. Pay attention.