Відео

Hello! Nice watching your video. How are you? What medicine you are taking? My wife is diagnosed lupus. Please share your journey. Good buy

I've had lupus since I was in my late thirties they call it the cousin of lupus I get blood clots my homemade lemon I guess at level blood level goes down real easy I can't get on swings it can't be spent around none of that I'm like 64 years old and I've been dealing with it for a long time it's not a good thing because my bottom lip will break out real bad and my lips crack so if you need any information my name is Jacqueline risner

been unwell for 5 yrs after H1N1 flu. never fully recovered. after exhausting many diagnoses and seeing multiple drs, every test my new, young PCP walked in and said "how long have you had that rash on your face?"and suggested rheumatologist. 1st rheumatologist appt provider said tell me your story if you want but i already know what is diagnosis-- lupus /SLE. he immediately put me on HCQ low dose. i didn't respond. double dose a lil better. i started Saphnelo infusion yesterday. i am 68

You're going through premenapause as well darling.

How are u now?

Thankyou-- very well done!

Hope you’re feeling better. I know this was two years ago, but I just found it. It’s crazy how long we go before we can get an actual diagnosis. It was probably 10 years for me if not better. I think one of the first problems is primaries always send us to a neurologist first and I think the first choice should always be a rheumatologist. or at least an endocrine doctor and they do a lot of imagery and don’t do the proper bloodwork to see if your anti-ANA and things like that or which really goes from there. I know you said you have a type of blood disease, a platelet disease, but I would get tested if I was you for if there is clotting problems and you’ve had problems with your pregnancies for APS antiphospholipid syndrome look up Dr Jason Knight, University of Michigan health. Besides the methotrexate found what helps me the most is Cymbalta. It’s really good for anti-anxiety, but also for the fatigue and the fibromyalgia problems or chronic fatigue syndrome. Did you at any point have Epstein-Barr syndrome or any virus like that mine probably start with that but even prior to that I did have the large hives and then thyroid problems and they’re almost always a link there. Thanks for posting and I hope your journey gets easier

I am a súper Athletic man who has struggled with this along with associated cancers. Thyriod cáncer thyriodectomy , renal carcinoma kidney, lung tumors, salivary tumor, skin cáncer, porotos cuts, . I am a fighters. In your opinion can i use Will and toughness to beat this lupus things?? Your lifestyle sounds similar i am just male.❤❤

Hi who is your doctor and where? I feel like we have the same story. I have always been super active as well . I haven’t been able to find a rheumatologist. I live in AZ and need to find one?

I look forward to hearing more about your progress. My story is very, very similar to yours. My official diagnosis is very new as well. I’ll definitely follow your journey. I’m wishing you all the best! 😊

Thank you for this. I have just found out I have lupus & this explains some of my symptoms.

Thank you for sharing your story...I was diagnosed in 2002 with SLE ...I'm also starting a podcast about my journey...please follow and subscribe...content coming soon youtube.com/@lupusbeyondchroniclesofachroni?si=EmMJKNE-ENJFO8lY

Thank God for you!! I've been praying for a doctor to just listen. I have lost direct family members to Lupus!! I'm using your video to prove my case to my Rheumatologist. I had every single test with the same results that you had, I'm currently otw to an ENT to look at my septal and tongue sores!! Oh, thank you for sharing❤❤❤❤❤

I have every single symptom as you. Low platelets, iron, Hashimotos, And my ANA tier is 1:640 homogeneous pattern. Thank you for this video. I need a new doctor. I feel validated

Fuck lupus. Fuck being tired. Fuck this shit.

It took ten years to find out I have auto immune diseases. I had given up at one point because I felt doctors didn’t believe me. No one did. Not my husband or the doctors. But finally found a primary dr who listened and refereed me to a great rheumatologist. He told me I should cut sugar and a possible try a gluten free diet but that is hard. Don’t give up - advocate for yourself.

Thank you for making this video. You have spoken hope into my heart. ♥️

I’m so thankful that to see someone get the help they need. Also, all should know that you can have each and every one of these symptoms but unless your ANA titter is over 1:80 and coursing damage your rheumatologist is most likely going to disregard your symptoms.

I’m so sorry you started having seizures! Did you find out why? That is so scary! You’re right it is ok to get help for mental health. It is more than ok, it should be something everyone does for themselves. It needs to be done in order to be the best you. I am new to your channel. I wrote about my story on your post about being diagnosed with Lupus. I can relate to your story 100% I had all of the same symptoms of you plus I have had a gross and painful wound on my leg for over a year now and between the both I have had no quality of life. I was feeling so hopeless,sad and depressed this last December that it scared me. I decided it was time to get some serious mental health. I checked myself into an inpatient place that treats drug and alcohol addiction too. They use group treatment there which was really helpful.

Thank you so much for making this video! I appreciate it so much! You described most every symptom I have. I came to the conclusion that I have Lupus on my own. My appointment with my Rheumatologist is not until May. I’m on the waiting list for cancelations. I have had fibromyalgia for 24 years now. I also have so many other medical conditions to name a few Hashimoto’s,Narcolepsy, TMJ disorder ,Raynard’s, nose and mouth sores, I am extremely sensitive to the sun and heat , arthritis in my ankles which I found is common with Lupus and I have had a awful and extremely painful leg wound for over a year now. I found out Lupus can cause leg wounds. A superficial wound just appeared one day and it slowly got worse and worse and bigger and bigger. I see a wound specialist once a week. He said my wound won’t heal until my legs aren’t hard, tight and swollen. My legs have been hard tight and swollen for over 6 years. 😕 I have been dealing with flare ups for over 6 years where my ankles hurt so bad that I can’t walk I have to shuffle. My legs swell up huge and my knees are so swollen I can’t bend my legs so I can sit without help or stand without help. I can’t climb stairs or wear normal shoes or socks. I was first misdiagnosed with Scleroderma then I was misdiagnosed with E.F. I really don’t know how they didn’t realize it could be Lupus? I thought fibromyalgia and my other conditions were the worst a body could feel but Lupus and this wound on my leg causes a whole new level of pain I didn’t know was possible! Not to downplay fibromyalgia. It’s a miserable condition to have on its own. It’s been the toughest year of my life. I have had no quality of life at all and have been so depressed. My anxiety is higher than ever. My 6 year old grandson is terminal and I need to be well enough to be able to travel from Washington to Idaho to spend time with him, my granddaughter and daughter. 😢 Time is precious, we don’t know how long he has. They use to live close to us and we spent everyday with them but their Dad, my Daughters Husband and our son in law committed suicide last March and my Daughter couldn’t afford housing here in Washington. 😢 We are still grieving. The thought of loosing my Grandson,Rowdy, is heart wrenching! I don’t think I’m strong enough to loose him. I love him so much! We have such a strong bond. ❤ I have some videos on my UA-cam channel if you want to see how sweet and adorable he is! Thank you again for making your video! I cried through a lot of your video, it was very touching and I could relate to all of it.❤ I just realized this is 2 years old, I hope you’re doing much better now! ❤

Thankyou will def try these!

Thankyou. I have had Rheumatoid for 12 years. I had a UTI a few weeks ago..they said there was blood in my urine..took Keflex antibiotics..had red butterfly rash that burns and hurts and I thought I was having an allergic reaction to antibitotics but it has persisted long after stopped, I am anxious and depressed, I am not dieting and have always been overweight but all of a sudden I am losing weight, I keep smelling cigarette smoke when nobody is smoking, been having issues with driving when I usually dont...I am wondering if it's lupus..waiting on test results.

I too am being told I have lupus and sjogrens. I have trouble excepting that possibility that any symptoms could be autoimmune related. It’s so frustrating to accept that the things happening is probably from the diagnosis that I haven’t truly claimed.

Is there a way to return to the living.??

Thank you!!

Thank you for sharing this! I started having flares in 2021 and they are debilitating and then another one in early 2023 and the symptoms didn’t quite fade away like they did before. I still have joint pains and stiffness in my hands every day. First symptom was loss in grip while lifting weights and being more fatigued thinking I needed more rest days. Got worse from there with joint pains and brain fog - forgetting words in the middle of my sentences. I’ve had flares in my feet or hands where I can’t use them with no known cause. I’ve tested positive for ANA but my other labs just aren’t there yet. Thankfully I’ve got a good doctor who firmly believes I have an autoimmune condition and is treating me as such because she said sometimes it can take up to 10 years for labs to catch up to symptoms. Again, thank you for this video for just confirming to me again that I’m not crazy!

I love you! And I agree 100%! Get help with mental health. Mental health is the "invisible" illness people can't see yet usually more important than the illnesses seen from the outside. You can be in bad physical health & be ok if your head is where it needs to be. However, it's practically impossible to be at a bad spot mentally & ok physically. I love you!

This made me cry, I have all the symptoms you mentioned and more. But I am totally invalidated by everyone, except my mother. Who looks after me when I crash. I have now been referred to rheumatologist and neurologist but waiting list is 4/6 months. I can't afford to go private, waiting on nhs is my only route. I'm so pleased to see you still go to the gym because I used to be so active but now struggle to walk some days 😢

What tests were done that confirmed SLE? ANA and Ro/La fit the Sjogrens diagnosis. I have Sjogrens, SLE, Antiphospholipid Syndrome and RA. I’m taking 400mg Plaquenil and .8 methotrexate injections. 🙏🏼💪🏼

It's been so difficult working out with an autoimmune disease. What I used to do for a warm up, has become my workout and even that feels to much for me. It's challenging feeling this way and seeing my body change drastically. Trying to stay encouraged but it's been tough. I wanted to start a family, but I can barely take care of me now.

I have been on Hydroxychloroquine for over 2 months now and see no difference. Was curious if you have felt a difference now?

It took 10 years to find out what was going on with me. A lot of people and including me thought that a lot of my problems were all in my head. I have so far been diagnosed with SLE and I also have a rare disease that is called c1 esterase inhibitor. I have been trying to get into the Dr to see if there is more wrong with me and also to start the treatment. It took a specialist ENT to find all that out. Right now I have been having major problems with pain in all my joints and some days I can barely walk to the bathroom so with that going I haven't had my first appointment with the RA Dr. I just feel so happy to know I'm not crazy and that I now know why I have been so bad for years. There are still some in my family doesn't believe what's going on. They just think that all the pain and everything else going with me is all in my mind. I am lucky to have family so close me that some of them can help me out. There's way more of the story.

I take a shower the same way

Hi Dreamcatcher Thank you for your video. Can I ask you a question? You said you had IPT. Were you and adult or a child.?

Thank you for sharing your story! I feel like you're telling my story. 2 years ago, pre Covid times, I was literally in the best shape of my life. I looked good and I felt wonderful then out of nowhere bam, all the crazy symptoms began. I initially attributed everything to being a tired stay-at-home mom to two small children but as more time passed, I quickly realized something more sinister was going on. I went to the ER several times for the chronic pain that I was in and they attributed everything to stress and anxiety. Over these past two years, I've continued to see several doctors due to the chronic fatigue, muscle pain and a crazy dizziness that I just can't shake and they too have diagnosed me with nothing more than stress and anxiety. I began to feel like I was going crazy! It seemed as though nobody believed me, and and on days it seemed like my husband didn't even believe me :( A few weeks ago I went to my PCP yet once again and I pushed for my inflammation markers to be checked as all other blood panels had come back normal, she agreed to the testing. And what would you know, My ANA came back positive and My Smith Antibodies came back at a ridiculously high level. Therefore, it is more than likely that I do have lupus. I will find out when I see her next Thursday. I think God that I kept pursuing this matter and advocating for myself because had I not, I would have likely been dismissed as I had in the past. Did you ever experience dizziness or persistent head pain / pressure? I've had several CT scans that all came back clear therefore I'm thinking all this has to be lupus related.

Running late on your posts

I now have a box for my medications

And the battle is on

Looking good, stay positive, you will be back

Wow !!!!!! This girl 👧 knows plenty of her mothers tittles aka boobies. Cool 😎 man !!!!!!!! 🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽

I don't what you going to do ( '_' )

I have been looking for someone like you. Thanks so much.

Oh wow… Thank god you have answers . I to just got told I’m on the same meds don’t notice any help relief yet. I also live in Az 2 hrs from San Diego looking forward to seeing what you can share. God Bless

Yep ,I know exactly how u feel ...I hate when they change or add to my meds ...

TOCA BOCA UIGDYHHEJH

I’m here for you beautiful.

thank you ❤

I love this kid I hope he is never racist 《 💜💙💚💛🧡❤🖤💕》

What is the game name

Thank you for sharing your story. I can relate to you. My story started back in 2005 when an mri showed there were 6 white lesions on my brain. I was showed the results. It could be... Lupus, MS, Migraines, and a few others were the reason for the lesions. Nothing was ever followed up as diagnosing. Just possibilities. I have followed up on every Doctor appt. I went to. I know my body and how I know how I feel. Ive had mri test galore. Blood tests etc. Im pre-diabetic to. So from 2005 to 2017 when I had a stroke, they are more articulate getting answers for me. Going through all the tests etc. Im still getting the same old. Then the results after my stroke, I was told its White Matters Disease. I was blacking out and falling. I broke my right wrist severely from the fall. Im told now its Cadasil. Two nuerologists swear by it. I dont!!! Both blood tests and skin biopsy were BOTH NEGATIVE. Im told its not MS. I begged my Doctor. I told her Im suffering. Its not Cadasil. I dony care what they say. I have all the symptoms of Lupus. Ulcers inside my mouth, red rash, very very sensitive to the sun. Hot and cold intolerance, sweatting profusely esp at night in bed. Now I have to see the rhuemologist. Im at my wits end.