My Lupus Journey: From Severe Flare to Diagnosis! 💪🔍

[@LampWaters]

Being ur own advocate while horribly sick is just as exhausting as being sick. I have ptsd and get anxiety and cry just dealing with doctors. My husband literally has to hold me while I cry after because its so traumatic to talk about especially when you have a new doctor its like you have to live it all over again and most have no time tome take adequate history and day 1 get annoyed with me even when i warn them or i try to make dbl Apts im told no then they get upset that a 10 min apt takes an hr but thats not my fault and i shouldn't feel guilty for not leaving if thetes important things that shouldn't be rushed. I miss healthy from decades ago. I miss real doctors. I needed three referrals the doctor tried to tell me oh come back in three months will take care of your referrals next time we'll just take care of the important ones today like know they're all important and waited 2 months just to see you just to get these three ref. all I care about is referrals signatures plz.....

[@SharriK1]

I don't understand how these doctors think they can treat a complex patient in 10 mins. Honestly, I think it is all about greed. The referral situation is just ridiculous.

[@annabellevaughn5968]

I am so sorry. I literally am driving an hour and a half to a larger hospital because of this. The last thing anyone wants is to have to spend the last energy they have explaining to someone who is obviously rushing and not interested. The hospitalist actually told me at the last hospital that if I thought I should go (after 5 days of 1 hour sleep each night, chest pain, dripping sweat, etc. I should go elsewhere and then tilted his head up and told me "Good Luck"). 😮 I took that advice! It was stressful but glad to be where I am.

[@moms9457]

I'm coming up on a year since the first time I saw my Rheumatologist, and I still don't have a diagnosis. All the blood markers for Lupus are there but they are ruling out Lymphoma, Leukemia and all kinds of scary stuff. I have 3 kids ages 8-12 and they need me to be up and about, it's taking way too long. Thank you for your story, knowing I'm not the only one who has been through this is encouraging.

[@sdd123]

You are not. It took 14 years for me to get a correct diagnosis. You are the norm actually. I wish you the best of health.

[@Armyoffrogs507]

I have lupus nephritis. I was diagnosed at 33. It took out my kidneys in a month. I was on dialysis for 3 years. I was blessed with a kidney transplant in 2017. My cousin also was diagnosed with Hashimoto's disease the same year that i was diagnosed. She was pregnant also at that time. I wish you all the best. Thank you for sharing your story with me.

[@subinsu8911]

I usually don’t comment on things but your story resonated with me so much. I’m currently 25 and have been a “medical mystery” since I was 12. Just recently did I finally get a pcp who listened to me and put in a referral for a rheumatologist, however after having to contact them MYSELF because they didn’t contact me, I found out that the provider there said that my high inflammatory markers and joint pain were not enough to be seen there so they closed the referral. Thankfully my pcp is just as upset as I am and she’s working to get me another referral for a different facility. My ANA is also negative but I have almost every symptom for Lupus or an autoimmune disease and I can’t let go without an answer. Thank you so much for sharing your story, it made me feel heard 💕

[@claudiaeriksson2496]

This video was so helpful. I’m just finding out that this is what is happening to me. I resonate so much. Thank you

[@LampWaters]

I starved for 18 months lost over 70lbs cudnt tell me whats wrong. Got surgery found endometriosis but abdomen full of scars and inflammation and my bowel stuck to my abdominal wall. Happening again but believe it is both endometriosis and lupus together flared.

[@terrywade3696]

I went through all of this with my daughter in her twenties. One thing I learned was Lupus SLE can also appear while being on psychotropic medications. She was misdiagnosed with Bipolar and put on those horrific medications and Lupus appeared. Once I figured out that she didn’t need those drugs and my research showed that psychotropic medications can mimic Lupus, I slowly weaned her off of them. Her Lupus symptoms began to disappear! It’s worth looking into if you’re on these medications.

[@SharriK1]

I wasn’t on any kind of mood medications until long after my lupus diagnosis. I only take it for the side effects of the Benlysta. I’m sorry to hear that happened to your daughter.

[@terrywade3696]

@@SharriK1 I just wanted to throw it out there for you and others in case you didn’t know about it. There have been several cases of drug induced Lupus that disappeared after the medications were discontinued.

[@KellyAnn1997]

Sending you much love. My mom just got a positive ANA and she’s being given a hard time by the doctors in trying to diagnose exactly what’s wrong. Very frustrating.

[@Fieldoferns14]

Hey girl! I'm also near Albany, NY. I haven't been to a doctor since 2016, because I have always been dismissed. I'm 35 now and desperate for some answers, almost positive I have lupus, or possibly Lyme. Thank you for this video, and for staying strong. God bless❤

[@Fat2FitThickkness34]

Im also near Albany. I happen to find a good rheumatologist in the area. But all my bloodwrk is coming back negative but i have a positive ANA. Which she doesnt understand why all the other tests are coming back negative. Hopefully i get answers soon. I see her again this week. Good luck lovey. Hope you get answers as well.❤

[@annabellevaughn5968]

Go now before you get to tired to explain your symptoms. I waited nine years after an eye doctor was very insulting. He turned the light off and left me sitting in the dark while I could have potentially lost my vision. He made a joke and told me "How is your vision now"? I didn't say a word-just left. I was sitting in the dark. He then told me to go find something else to worry about. I later found out I was having an Ms flare and later years nine to be exact I was diagnosed with Ms and then referred to a great ophthalmologist who told me if I ever lost any of my field of vision to come in and not even stop at the front desk my retina could be detaching and I could go blind😢. A good doctor that is listening makes all the difference. Unfortunately I was young and humiliated by that first doctor and probably developed more lesions while being too upset to see any doctor for fear of a repeat of that day.😢 No some thirty years later I am a rare case diagnosed with morphea (nearly died, became completely stiff-hospitalized), then Lupus. I call them the twisted sisters. Apparently immune breakdowns can go hand in hand. My Mom, Uncle and two Aunts had MS, I suspect the Lupus was from my Dad and his Mom? I am so thankful you left and went elsewhere. Your twenties was bad but at least you finally feel your in good hands. It makes such a difference. I have had a fabulous neurologist through my thirties, forties and fifties, thank God for him. He is Dr. Christopher LaGanke at North Central Neurology and he is in my opinion the best Ms doctor. He goes all over the world educating other doctors on the latest Ms treatments. I thank God for him.

[@Riverchicky]

I needed to watch this today. Just finished with my rheumatologist (second opinion) who said I had a systemic autoimmune condition because of the shape of my nail bed capillaries. Had all the blood work done and everything except for ESR and complement C3 and C50 came back normal. But no further testing 😢. I'm looking for another rheumatologist and hoping my immunologist can help with the referral.

[@amyrangel3777]

Thanks for sharing. My ana was high and other tests negative. I have to wait 5 months to see a rheumatologist. I do have hashimotos, however, all the symptoms I am having right now leads my Functional medicine Dr to believe it is lupus and possibly sjogrens.

[@cherylconnolly134]

I am now 61. My journey started at 19. I had facial lesions that would not heal. It took going to many dermatologists, treatments and being told I was just being vain, to finally getting referred to Stanford. After core biopsies, they finally determined discoid lupus and put me on Plaquenil. Several years went by, and my new dermatologist took me off it and has treated them as they occurred with steroid injections. The road was long, rough and demeaning, at times.

[@SharriK1]

I really wonder what's wrong with these doctors. What makes them think it's okay to treat patients like this. I'm so sorry you went through that.

[@ziaway1561]

Thank you very much for sharing your personal story! You’re certainly not alone as I know many of us have a similar theme. It’s a tough time when you ‘lose yourself’ and cannot understand what or why. Then, after diagnoses, it isn’t easily resolved. I’m a PA in psych and have spent more time researching AiD and find it fascinating. While losing parts of the self we were well-acquainted with, we find other aspects of our selves that we may not have been aware of. What a journey! Wishing you peace, happiness and wellness!😊

[@HoppySabbathHomestead]

Thank you so much for this I am in the diagnosis process now blood is pointing to lupus but symptoms say sjogren's disease. I go for my lip biopsy on the 2nd. I appreciate your vulnerability ❤

[@jessicathomas9935]

I fear this is what's going on with me. I already have an autoimmune disease, psoriasis but I KNOW something else is going on aside from possible perimenopause. Ive had so much fatigue, joint and especially muscle issues. I just said to my husband a couple of months ago it feels like my muscle is wasting away. It goes in spurts, I now realize are more likely flares and is ALWAYS terrible during the summer when I'm outside in the sun a ton doing yardwork. This year I started breaking out in an itchy rash on my arms, chest and back when out in the sun. I wake up ALL the time to painfully swollen hands and have such a hard time sleeping because my legs hurt so much. I can't lay on any seems of clothing as it hurts my legs so much. Just in the last year Ive hac issues with ac joint in my left shoulder and now have issues with both the joints and muscles in my right shoulder and tore my right bicep in May and its still giving me issues. I was a huge athlete my entire life and had a TON of muscle, i shouldn't be experiencing this many issues in my early 40s. It's so frustrating!

[@marissahumblytherealistone8950]

Just wanted to say God bless you Girl Abundantly 🧡🙏🏼 Sending Blessings from the Most High God ur way 🎯🌺🎁 Also, DON'T WORRY‼️🤌

[@Natasha_Mae]

I'm so sorry you had to go through this! I'm currently dealing with some issues and wondering if it's lupus.

[@lorijones9210]

Thank you for sharing your story. Im older but have been sick since i was a teen and have been diagnosed with severe Lupus and RA for 3 yrs now and we havent found a treatment that works yet. Dont you just love the "come back in 3 months..." We have lousy doctors where I live. I have to travel. The family doctor i had at the time insisted i didnt have lupus despite it running in my family. He actually sent me to the rheumatologist who diagnosed me to prove to me that i DID NOT have it lol. Obviously HE was wrong. The frustrating thing is that I had to get VERY sick so now its like trying to untangle a ball of yarn or perhaps a better example is being in one of those mirror mazes-if we do this treatment it could make that worse and we cant do that treatment because of this. I was particularly drawn to your story because i too started before my diagnosis just like you with the strange symptoms. Ive also had paralysis. I was curious though if you ever experienced a sensation of tremendous gravity? Kind of like extreme GForce pushing you down on a rollercoaster? I also have times that my family jokinly say that i briefy go to an alternative dimension. I just freeze in motion and i lose that time; just totally blank out. I dont drop like passing out. Its not falling asleep. I just am briefly not there. Well ive wrote too much as it is...praying for a miracle.

[@SharriK1]

I haven't had the roller coaster thing you're talking about. I have been suffering since pre-teen years with strange symptoms. I have literally had to move out of state to get better health care, the best decision I've ever made! I'm so sorry you're going through this.

[@lorijones9210]

@@SharriK1 I'm sorry any of us are going through this. we've talked about moving but my husband's job is here and without the insurance from his job we'd be hurting much worse than we are. :/

[@leeking6185]

​@@SharriK1Where did you get better care pls?

[@SharriK1]

@leeking6185 In my opinion, and personal experience, the best care in the US is Massachusetts, New York ( but absolutely no further north than the Hudson Vally even that's a stretch! NYC is best, and most definitely not the Capital District (Albany area), Virginia has honestly been very good. Any other southern state past Virginia ABSOUTLEY NOT STAY FAR AWAY!!! You will likely feel like you're getting medical care in a third-world country. Hope this helps.

[@marcialawing761]

Omg that I’ve never experienced especially with lupus tired pain almost every where what I’ve experienced and more headaches

[@sdd123]

I know what you mean about being hot and cold. . Feel well!Are you on both saphnello and benlysta?I am switching to saphnello as the benlysta is not working anymore. Best of luck.

[@SharriK1]

Im on Benlysta weekly auto injections, Cellcept, and plaqunil.

[@Hanna-s5j]

These are exactly symptoms what i experiencing. Still no diagnosis

[@marydrummond8832]

Thank you . Sorry it took years away from you .

[@marcialawing761]

Blessing

[@inao649]

I wanted to add the blood IGENEX test I believe is more accurate than there urine I believe. You can see if insurance will pay but a lot times they won’t it’s an expensive test . I think mine was over a grand but I finally got answered what was going on as they saw the infection in my blood.

[@SharriK1]

They did test for Lyme disease, it came back negative. I think the IGENEX is a Lyme disease test?

[@inao649]

@@SharriK1 ok hun 👍I just wanted to toss it out there if it could / would help. Yes it is a lyme test but they also test for co- infections that are other bacteria you can get from tics or bites. Some people get more than one infection that are different. Some people won’t get lyme but other tic borne bacteria. Like my son was positive for Lyme but I wasn’t and I was positive for babesia but we know I had lyme also because I had the rash and passed on to my son from when I was pregnant. From what I was told the regular Drs don’t do this test it’s more advanced and complicated since they don’t just go off antibodies like the western blot and Elisa test. I was told most people who have Lyme undiagnosed for awhile, their bodies stop producing the antibodies-which would result in a false - negative lyme test when actually really could be or is positive… if that makes sense lol ughhhh 🤪why is illness so complicated 😳

[@liontribeofjudah5616]

I am suffering with something that had not been diagnosed yet. I have a positive ANA..I need a good doctor.

[@SharriK1]

Do you have a family history of autoimmune disease?

[@RedandAprilOff-Grid]

❤️🥺

[@something2chewon]

I would love to talk to you. I'm 50 and have tons of symptoms and it's as if I have to be my own docter. I did get diagnosed with fibro at 36 years old but many of my symptoms don't fit fibro and I'm suffering . I KNOW I have another autoimmune disorder but am NOT getting help.

[@SharriK1]

This happens to so many people it’s disgusting! You can message me on fb.

[@normavillafane2014]

I go through slot iny body these doctors the think nothing but give pills with out telling the truth or they are lazy and the insurance pays them

[@cherubfoxx]

Were your tremors visible or internal?

[@SharriK1]

Both.

[@annabellevaughn5968]

I tremor (noticed it was acting up but wasnt sure if it was my seizures), sweat-drip then chills, mouth sore lips hurt, hair falling out, rash at hairline, ears awful itchy, near hairline, too. Prayers.

[@JuanDiazSilvermyst]

Thats weird...i got these symptoms

[@SharriK1]

I'm so sorry it's taken me so long to see this comment! Are you still having symptoms? Getting to a GOOD rheumatologist is the first step. Sometimes, unfortunately easier said than done. Feel free to PM me if you need anything.

[@Lady.Fern.]

@@SharriK1I think I dropped the ball going to a regular gp, I have all the symptoms except facial rash, she immediately ran tests but says they came back clear. 😭

[@YesNutritionWorks]

Cut ALL sugar out of your diet. It will be tough. Do it gradually over a month. You will most probably get withdrawal as it is said to be harder than coming off cocaine. But in the end after 10 days of no sugar - you will start to feel much better. All the best.

[@bobbislife8006]

It is a tipe of cancer

[@SharriK1]

No.