ฝัง
- เผยแพร่เมื่อ 24 ก.ย. 2022
- In this enlightening video, I delve into the complexities of obtaining a diagnosis for ANA Negative Systemic Lupus. 🌟 From understanding the diagnostic process to navigating the challenges of negative ANA results, I share personal insights and expert advice to empower those on a similar journey. Let's unravel the mystery together and shed light on the path to diagnosis and treatment. Remember, you're not alone in this journey! 💪 #LupusDiagnosis #ANANegative #ChronicIllnessAwareness 🩺 #lupuswarrior #autoimmunediseases #
I saw a hematologist bc I kept having high monocytes. She sent me for bloodwork she called me and said I was ANA positive it’s lupus not cancer. 3 months later I saw a rheumatologist and she told me I was not ANA positive ENOUGH. It can’t be lupus. My number was the lowest 1:80 homogenous. I have every other symptom. I spent this entire summer sleeping or barely able to move. The butterfly rash on my face was rosea, not a malar rash the swelling in my fingers were cysts. Every symptom she asked me about that I had, she would give me a reason why it wasn’t lupus. You lost 40 pounds in 4 months and then stopped? Not lupus, migraine headache? Not lupus, pain in every joint? Not lupus. A rash on your chest for months on end after being exposed to the sun? Not lupus. It was so frustrating!!! I walked out of there and just knew what I was about to face. It’s so sad for all of us.
It makes me sick!!! I hear stories like this all the time. If your rheumatologist is an idiot, and unfortunately a lot of them are find a new one!!!
@@SharriK1 yes, I’m working on that. I would NEVER go back to a doctor that dismissed me the way she did.
@@SharriK1 also, thank you for making a video like this. It definitely made me feel better and not alone.
Some of my early symptoms were high WBC counts, which rheumatologists always dismissed. But it can be an inflammatory marker for someone with seronegative RA, esp since my sed rates always normal and I have an IgA deficiency.
Same exact thing just happened to me I say it’s better to get a better physician an get things under controlled before it gets worse
Mine started with a positive 1:320 ANA, low C-3, malar rash, arthritis, and anemia. I was diagnosed with a high probability of SLE lupus. The next test showed a negative ANA, but a highly positive SSA antibody. They immediately changed it to Sogrens Syndrome based on the one negative ANA. Other doctors said the positive SSA and negative ANA can't happen, but the repeated tests showed the same thing, so they admitted they were wrong but stressed how rare it is and that I have nothing really wrong with me. Just that I need to be tracked periodically. It remained Sogrens (for insurance purposes) despite no dryness until two years (3 ENA panels) later when my ANA was positive again,1:640 speckled. Lupus was back on the table, but only as the limited form. Another year later, they found dsDNA antibodies and a bunch of other blood abnormalities. Now it's apparently full-blown SLE lupus, and my Rhuemy no longer treats me like I'm a paranoid hypochondriac. Suddenly, my pain and fatigue are real. Go figure 🤔!!!
Your story is actually very typical, it takes some people years for Lupus to show in bloodwork. The problem is that doctors ignore clinical symptoms with negative labs and they shouldn’t. Took 3 years and counting to get my diagnosis. My Ana was negative first 3 times over a years span. Finally it was positive 1:160 and received lymph node biopsy and now they suspect Lupus. Doctors need to stop treating us like it’s all in our head just bc the labs are late to prove.
It took over ten years to find a rheumatologist that will listen and run all of the test. It is a huge problem. You’re right.
This is a great video! I am 71 years of age. My symptoms began at age 18. It took me over 24 years before I received a diagnosis , BASED on symptoms only!! Only one time in all these years did I have positive on ANY tests! Also recently , since April up to now I have been in several ER’S. MOST doctors Still in this age know almost nothing regarding SLE! Also most doctors do not care to even care to have lupus patients to in their care! This topic needs to be discussed OFTEN! Also I would like to add a lupus person needs to be their own advocate! It is US that inform most doctors, and I have had an entire life time struggle with this disease. Keep talking !! Thank you . The young women need to listen to this topic !!❤
Thank you so much for this comment! I’m sorry you’ve had to live like this for so long! 😢
I know it was hard very very hard but you are 71 and you have you symtoms for decades ..its blessing that you still with us
It's been about 5 years now for me since my health started to decline. About 3 years ago I started searching for a diagnosis. The very first thing I thought it was, lupus. But I was wrote off by so many doctors and ER visits. My blood work has always been negative or borderline, except for my liver enzymes. Then I got my hashimotos diagnosis as well as anemia. Now my hashimotos is stable but im still so sick all the time. I can check off almost every lupus symptom but my ana has always been negative. The only thing that was recently low was my C4. Which has brought me back to my original thinking of a lupus diagnosis. I just want to be validated by my doctors and family. Most people think I'm a hypochondriac and it's just "getting older". Oh how I wish they were right. With all this new information I'm learning, I will be pushing for some kind of treatment with or without a lupus diagnosis. I just want to feel better.
It took me getting deathly ill before they made a diagnosis! I would keep an eye on the C3. In my experience once both the C3, and C4 are low it’s easier to get a diagnosis. I’m sorry your going through this I hear a lot of similar stories.
I have been suffering from Lupus disease for some year without having a solution to it until i done a research on TH-cam i come and cross Dr.Auchi on TH-cam channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend Dr.Auchi herbal medicine for Lupus disease cure...❤️❤️❤️❤️
i was so ill for years then boom sunlight gave me a rash
@@tracysmith245 Is that what finally gave you an indication it was lupus?
I was told positive ana speckled is not indicative of lupus. Other autoimmune diseases have ana + patients ( 35+ yrs ms)
Specialist gatekeeping! Thank you so much for this video. This is a huge conversation that needs to happen. I just want to ask the medical community what it's like to have no shame. I hate that you had to go through this. I am currently going through this right now. 3 years plus over here. Labs should not be the gold standard. Can we all just say we would all benefit if House was a real dr? Again, this video is everything! ❤
Do you have an email or way to speak with you?
This is me! ANA is negative, but I have majority of the symptoms! I tested positive about 8yrs ago, but since then I’ve been testing negative. It’s almost not a day that goes by that I’m not in PAIN!😢 I also have days and especially nights where I itch non stop. I’ll get a rash on my hand every blue moon, but I get thrush on my tongue often. It’s so much pain….😢 I have spikes ever so many months where my legs and arms inflate more than normal, and I spike fevers up to 105. It last anywhere from 24 to 72 hours. 😭 They say “O it’s fibromyalgia!”My CSR and ESR are off the charts!
I’m in the process of being diagnosed with SLE and my c3 and c4 test came back extremely extremely low , I haven’t seen my ANA and have been so anxious if it’s negative they’re going to try to say it’s something else . Which they are concerned it may be a muscle disease . This video was so so soooo helpful I feel heard and seen . Please keep making videos , you’re amazing hun thank you !!
It took DECADES for me to finally get a diagnosis. I’ve looked back and realized that there were periods of remission, but have had these issues since my childhood. It started with 5ths disease. Then Epstein Barre, then Lyme… I was told it was depression, then post partum… I was shamed and called a hypochondriac. When I got good health insurance it was a rabbit hole of all kinds of other tests and just throwing meds at me. I’m just sending all my love and prayers to all of you!!!
Me too. Decades of not being heard, of being very ill off and on and so debilitated now and I still can't get into a Rheumatologist. Having to self advocate, fight and dig deep to be optimistic is near impossible. I used to be an extremely healthy person, a distance athlete, vibrant and strong, not a complainer or hypochondriac, etc. I always loved my life, yet it has been slipping away as local PA's and Doctors tell me "you're fine".
Thank you for sharing as it helps me. I know that I'm a rational, educated, self aware person even when some in the medical world have sadly become detrimental to my mental wellness....
Knowing that so many of us have such similar paths to any kind of care breaks my heart, yet knowing of others comforts me strangely too . Thank you
Sorry for such a long ramble.
@@TEPO-- Ramble on!!! Unlike most professionals we actually give a Shit. I’ve been ( after years of avoiding) yet another Rheumatologist, my ANA is still positive but flipped type, now they’re thinking Sarcoidosis, but I remain a conundrum. That’s a whole new level of unique frustration.
I’m just trying to live out my days with as much grace as possible. I truly do hope that one day there are answers.
Curious if you have tried methylane Blue. You get online or prescription but it has to be compounded at a compounding pharmacy and insurance won't pay for it. Most items you need to recover insurance won't pay for like a functional medicine doctor
I’m really happy you made this video! I hope you continue to keep people informed. Over 2k views!
Thank you so for sharing, hearing you as though you words are speaking so much of my experience. I was such a healthy, vibrant and strong person, athlete, etc., but trying to advocate for myself when so sick and debilitated now, through the process of the medical world has been brutal. I feel that I've been loosing my voice to deph ears and questioning myself so much is such additional exaustion.
So sad the Lupus journey seems so brutal for so many.
Once again your voice and time are appreciated.
You're absolutely right. I had dry eyes & mouth and realized I had Sjogren's Syndrome. I already had Graves disease, and I knew that once you have one, you may get more autoimmune diseases. My ANA test came back negative, so of course my doctor didn't believe me. I went to the eye doctor and got a Schirmer test, and that finally convinced him.
If dry mouth how to get test? My mouth very dry
You can have negative Ana with Sjogrens it’s not uncommon but Lupus is uncommon with negative AnA
Bless you girl for posting this video
There is an old saying of lupus 7 doctors or 7 years which ever comes first..I think It took longer than 7 for me. 4 or 5 doctors. I have positive ANA and the other goodies that cause a baddie. I would test positive for mono often too. I had been to the dr for every symptom. My first diagnosis was decades ago. Was told I had fibro. I didn't tell a soul because to me it was that lazy rheumatologist diagnosis and he ran no labs! Then my family dr recommended me to a good top rheumatologist in lupus. She has been my angel. I had paracarditis which sucked! I thought I was knocking on heavens door at the point.
Yes 7 doctors or 7 years is right! There does seem to be a lot of laziness.
I have been suffering from Lupus disease for some year without having a solution to it until i done a research on TH-cam i come and cross Dr.Auchi on TH-cam channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend Dr.Auchi herbal medicine for Lupus disease cure...❤️❤️❤️❤️
I have a positive RNP and positive C4 & C3 and my Dr has never said anything. Also, positive SS-B and positive RA factor PLUS STIFF PERSON SYNDROME. I’m also from upstate New York and moved south. I switched drs but I’m waiting to see if I can be seen sooner than November! Thank you for the info. I worked for drs for years and know medical terms so I sent the new doctor a message. I see all my doctors at the same clinic. If this doctor doesn’t get me in sooner.. I’m going to involve ALL my doctors and go to the top and complain. I can go to another group. Sorry for your diagnosis.
Medical systems seem to be breaking down everywhere. In Canada we have significant doctor shortages and getting to see a specialist is really difficult and in Canada the system is designed so that you can't see a specialist without a referral from your PCP. I had to push mine to refer me to a rheumatologist. My hubby is from the UK and we follow the news from there. They have significant medical system issues too.
What a huge relief your video has been!! I also live in Florida and 💯 agree about poor Healthcare here. It's beyond horrible. I have not been diagnosed yet, mainly bc my ANA has been negative, even though I have severe SLE symptoms. Plus, I have 100% coverage with Medicare + a supplement (expensive but worth it). Getting in with a rheumatologist is ridiculously difficult. Finally got a referral days ago, but it was pulling teeth. No idea when I will be seen. I am grateful to learn about the DUKE research! Ty. I am in Duval County. Agree about Healthcare in the North...far superior. I need to get out of Florida bc of severe heat intolerance and sun sensitive. The PANDEMIC sidelined my exit plans, but hope to get back to Virginia ASAP. Do you have skin issues? For me, skin is major problem with rashes and painful ulcers. So happy to find your channel! ♥
I have definitely had some odd skin issues. I’m sure healthcare in VA will be much better than here I hope your able to get out of Florida soon.
Absolutely true...I'm sick of the approach doctors at the best hospitals in the country are taking. My daughter has a positive ANA 1:160 Homogeneous with severe joint pain and butterfly rash and yet refuse to diagnose her
One of my Aunties is in a similar situation. She’s now having seizures and kidney problems. They refused to diagnose for years despite positive ANA on a Avise. Now she has obvious permeate organ damage and all they will do is give her hydroxychloroquine! 🤬😢
So sorry to hear about your daughter!
Thank you for your sympathy, I have lupus myself and I know how bad this disease can be
I have been suffering from Lupus disease for some year without having a solution to it until i done a research on TH-cam i come and cross Dr.Auchi on TH-cam channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend Dr.Auchi herbal medicine for Lupus disease cure...❤️❤️❤️❤️
This video helped me so much! Thank you for sharing your story! I’ve been on this journey of having a negative ANA and almost all the symptoms of lupus for a few years now. I am a military spouse and we move a lot so that hasn’t been ideal for a proper diagnosis either. It has been very frustrating at times to feel your weakest and not have answers. I was recently diagnosed with Sjorgen’s syndrome, but my body is definitely letting me know something else is going on….
Always trust your instincts! Keep pushing till you get a diagnosis don’t take these doctors crap.
@@SharriK1 absolutely! I know my body best. It is sad we have to go thru so much just to be heard!
Oh my goodness I don’t know how you dealt with the Florida heat with lupus symptoms! I have been sick on and off since I was a teenager with undiagnosed seizures, severe back pain and joint pain, and undiagnosed daily low-grade fevers, very frequent migraines. It got really bad starting 10 years ago and I’ve been on a quest to find a diagnosis for the last 10 years. I have had a positive ANA and a positive double stranded DNA test. I have low white blood count and some days feel so sick I just have to stay in bed. And of course I also get the it could be this it could be that.
My 12 year old daughter has been having issues not feeling well for quite a while. She just saw a rheumatologist for the first time weeks ago and was diagnosed with hypermobility. Her labs showed a positive ANA, high sed rate, high protien and low vitamin D as well as another high marker, i cant remember which one. She seems to have mast cell issues and allergies she struggles with as well. I myself have been fighting through very scary symptoms the last few years from heart issues, severe digestive issues, to at times muscle weakness so severe ive been unable to walk for weeks. I have positive antibodies for an autoimmune panel GAD 65 encephalopathy. They told me its "normal and probably nothing" it took me 3 years of really scary debilitating symptoms to be diagnosed with myalgic encephalomyelitis and generalized hypermobility. My mother has mitochondrial disease and wasnt diagnosed until the last 10 years. She spent my entire childhood sick with no answers and she is in such bad condition now it will be a miracle if she makes it another year. It truly is a disgrace how hard it is to get answers and help for things and to be afraid to even ask after a certain point because you are viewed as a hypochondriac. I never realized this until my health started to decline and the health of people around me that i know. It is tragic and sad. Thank you for sharing your story! It needs to be heard. ❤
As a person who has seronegative primary biliary cholangitis, an autoimmune disease of the bile ducts that is progressively destroying my liver, I empathize with you! It took me 11 years to finally get my diagnosis and treatment after a liver biopsy, otherwise all the antibodies for this disease were negative in my lab tests. An hepatologist even looked at me as if I was crazy to come back to him because he didn't think that something was wrong with me. I consulted two other hepatologists after him and the last one is fantastic and she pushed the investigation further.
Which test have you done for diagnosis?
@@DeepakRajput2000 A liver biopsy and several blood samples that showed that I have had elevated liver enzymes for several years with months of remission followed by flare ups. Also 4 transient elastography scans throughout the years (FibroScan) to measure the level of fibrosis in my liver.
Hello! Thank you for making this video. I was just told by my neurologist that my ANA antibodies are positive with Homeogeneous Pattern 1:320. A lot of my protein levels ( Beta Golbulin, Globuin and Total protein)are flagged as high with C3 serum flagged as high also. My Neurologist tested me for antobodies such as Anti-Jo-1, DS DNA, CCP, Centromere B, Chromatin, SSA and SSB, Smith, SLC 70, RNP, M2, Actin antibody, and Antiparietal cell antibody. They are all within range. The ones she did not test for are CCP, Rheumatoid factor, Cardiolopin and Ribosomal P. I have a lot of symptoms like hair thinning/ loss, joint pain, muscle weakness in arms and legs, itching with no rash, electric shock down my neck when I move my neck, cog fog, cramps and spasms all over my body with tingling and twitching, tremors after I lift something, fatigue, body aches, burning sensations in my joints like they feel warm too the touch sometimes, and last month I had some difficulty walking and with balance issues. Also I have my first psoriasis patch on my thigh. I told my neurologist that I believed my symptoms where related to Multiple Sclerosis but after my blood results she referred me to a Rheumatologist. I have an appointment with them on July 11 and I'm nervous because there is lupus in my family ( my aunt and her daughter my cousin on my mom's side have lupus). I don't know about my dad's side. Is it possible to have more than one autoimmune condition or are my symptoms pointing toward Lupus? I just can't wait for my appointment 😔
I've been diagnosed with more than one autoimmune disease. It's entirely possible.
🤗 Thank You!!!!
Hi. You are spot on with so many things you say. Interesting, I live in Upstate, New York, Green county, and the medical care I have, even though I live remote, has been amazing, even though it took 10 years to get an accurate diagnosis. My husband and I are considering retiring to another state, but I’m so afraid of what the medical care would be like, Florida is one state that we are considering. I have a vacation home in Volusia County and made a friend there who also has lupus, She does not get very good medical care from the rheumatologist she see and she said there’s not many choices even though the area is populated. I started taking Saphnelo as well and it has been a game changer. Would love to talk to you further.
You can find me on Facebook Sharri Kring. I'll gladly accept a friend request.
I am ANA negative Sjogrens. Rheumotologist doesn’t even seem to realize that pain and fatigue are symptoms of Sjogrens. He tells me it must be fibromyalgia. I live in northern Illinois, I had to travel out of state for several years for care. I was classified UCTD for 7 years before I was to,d Sjogrens though didn’t discover it for another year when I switched doctors. My new Rheumotologist keeps running the ssa/ssb which were positive in another state where they use a more sensitive test and it is negative here. He thinks if it is negative I am in remission and therefore regardless of what I tell him I must be okay. I just don’t share any more unless asked. I can’t really switch doctors again as I am running out of options. Thankfully my primary is really good. I haven’t had a pain free day in a decade and it wears you down.
I have had a high ANA for 11 years, with other symptoms like Raynaud’s, and rheums refused to diagnose or treat me based on my Hashimoto’s and not having specific CTD antibodies. My ANA was 1:160 so not high enough. My dsDNA was 162 on Avise which should be positive but was flagged as negative due to their messed up reference ranges. I have low IgA (50), low IgE (2) and my C4 is only 14-16. I currently have a dx of Psoriatic Arthritis and UCTD. I’m on Humira and it’s been helping. But it took 10 years to get Humira. I have x-ray proven arthritis in >10 joints, and I should have been treated whrn this started back in 2012. I also have pernicious anemia too.
Thank you for the video so much. 2017 I was dxd but took over 5 years and multiple DRs appointments. I take the plaqunel for over 20 years now does nothing except maybe keeping my lupus from getting worse perhaps
Thank you
My health has been deteriorating for over 5 years now. After 3 hospital visits and a negative ANA test. Still in pain with all the symptoms for lupus.
Im so sorry you're going through this. You're not alone this happens to a lot of us for many years. It's completely unacceptable! 😥
I’m sorry you have to go through this. It’s such a shame. Why can’t this country get it together with health care!?
big pharma makes big money . that's why . they don't want you healthy.
My daughter turning 19 this May. Been dealing with this since 7th grade. Hasn’t attended school since 13. Debilitating Illnesses and the struggle is real so hard to watch my daughter suffer and I am always fighting her doctors. Just told they feel it’s Lupus but it takes time to get diagnosed.
My eye doctor suggested I be checked for Sjogrens syndrome, and when I finally was, I was diagnosed with Lupus. One Rheumatologist was able to see me, OVER ONE YEAR from now. I have finally gotten in to see one the middle of this coming June….and over two hour drive from me. Seems to me that the Rheumatologist is a rare bird in THE SOUTH, and almost on the endangered species list. Don’t know what will happen, but I have always had immune issues, but worse since I became a Covid victim. Now my husband, who also experienced Covid and no preexisting immune issues, now has them…
For those in Florida without health insurance look into your county’s community health centers. They operate on a sliding scale and they are funded by the federal government.
I am a Canadian, from 1960s Alberta is a rich province and had good Universities with very smart Drs in the Medical and University systeem that I saw.
However my Mother couldnt understand autoimmue diseases, but could understand kidney disease. I was first hospitalized with glomerularnephritis at the age of 9.
I had open kidney biopsies at 12 years old which showed the same problems as Lupus Nephritis.
I had a kidney transplant at 57 years of age.
I was not diagnosed with Lupus and Mixed Connective Tissue Disease til. the age of 60 in the US, Washington state.
Mostly becaus of a negative ANA.😂
Thank you for doing this video and sharing all of that info. I can totally relate. I have been battling an autoimmune condition, more specifically a connective tissue disorder for almost 20 years since I got my first flare. Have been off and on ANA +, have tons of symptoms, from fatigue everywhere including my vocal chords, to pain in every joint and muscle, nerve pain, rashes, trouble swallowing. But because I don’t present all of the the classic lupus symptoms like the malar rash I get dismissed, however they haven’t bothered to really dig deeper by doing other types of blood work that along with symptoms might indicate what type of condition I have whether it’s lupus or not. I’ve been doing my own research for years and documenting all of my symptoms and everything indicates lupus. Have looked for another Rheumy more than once and same thing happens, “oh it’s fibromyalgia” (which I think is a bullshit made up condition when they can’t find an answer). Now they think is psoriatic arthritis, Im still doubtful of that. It’s extremely frustrating. In my experience it seems to me they are lazy to find answers if they aren’t in plain sight for them, meanwhile we keep getting sicker. I get there is no specific testing to diagnose and that makes it trickier, but there are plenty of additional testing whether is blood work or other things and they just won’t do them. Also, I think they need to get involved in the community of lupus patients, so they can see for themselves the variety of symptoms lupus presents in everyone. You have to literally be dying for them to take more interest. It’s shameful and it definitely needs to change.
This is exactly what I’ve been saying for years!!! This is so validating thank you😊 Due to all the comments on this video I’m going to be doing a part two this evening.
I went though all of the same nonsense, and successfully overcame it. This is why I started this channel so you guys are armed with all the information you need. You’re right something has to change!!!
How to dignos if ana test is negative
Just about four years ago I ended up in the ER because I was having severe abdominal pain. My liver was inflamed and my liver enzymes were very high. They ran an ANA test which was positive for autoimmune hepatitis. I got a referral to a rheumatologist and the wait time was almost a year. This was back in 2018. I also had a positive ANA in 2019 and it was positive for SLE. This was after the liver inflammation subsided. Still haven’t seen a rheumatologist.
That’s crazy! How can they leave you like this.
Oh, wow! You definitely need to see a rheumatologist. I just saw an allergist- immunologist at Mayo and already had an appointment scheduled with a rheumatologist but long wait time. The Dr at Mayo was excellent and ran so many labs and he wants more but the ones from last draw aren't any good at this date as need to be run within 2 hrs of draw. I'm going back in Oct for CT and pulmonary function testing and he said we'll do more then. Look up inflammatory markers
I've been dealing with ALL the lupus symptoms and getting increasingly worse over the last 14 years. I've had other diagnosis that doesn't seem to fit, and many times being told it's all in my head. I'm not going to give up but it's so hard to fight when your so sick you can't function.
I moved to Florida and seen a rheumatologist and have a negative ANA and was diagnosed with SLE. It has been 2 years and I have only seen my rheumatologist twice and I was told that they don’t need to do labs again. There is no need to. I was also told I’m not allowed to see my rheumatologist every third visit, because he is too busy!
I’ve went to Drs for 34 years each year worse , I finally figured out what I had hidradenitis suppurativa The medical care in my area is the worst as far a getting a diagnosis . My problem now is finding a Dr that knows how to treat this.
I have HS too! On top of ADHD, PCOS and now possibly an autoimmune disease as I have a positive ANA 1:320 homogeneous waiting to be seen by a Rheumatologist. My HS is in remission now idk how it did all of a sudden but I thank God for that because my flares were bad and frequent like once a month. Find a good dermatologist in your area. Hang in there 🙏
I am so sure I have lupus. But my ANA is negative so they wont even look further. My doctor says I definitely have an autoimmune disease but she cannot diagnose me. She has sent me back to the rheumatologist but I feel like I am going in circles. Now I have cancer and I am dealing with that too. You definitely don’t want lupus AND cancer, it really screwed me and my life up. I barely had a quality of life before, now I have zero. My cancer has a high survival rate (but it also has a high recurrence rate so it could come back) and it is fairly easy to treat compared to some cancers. It doesn’t respond well to chemo so I am having surgeries and internal radiotherapy to treat it. If that doesn’t work, then more surgery, more internal radiotherapy and/or external beam radiation and a TKI as a last resort (targeted therapy, similar to chemo). Most people respond to the treatments OK because it’s not like chemo, but for me… it may as well have been chemo. I am so sick.
I think apart from ANA there is another antibody test for Lupus such as anti dsdna. If the Dr. is rheumatologist they know what tests should be administered.
Hello. A family member of mine has issues at night time but no doctor can figure it out, or... They dont care and make a guess. They dont even do tests. For the past 5 months, she goes to bed at 10pm. And 10 minutes later she starts shaking, says she is cold. Uses an electric blanket. Out of breath. Fast heart beat like 128. 02 level 88 - 91. Very weak. I check her temp a lot, and sometimes it 97. Or 98. But later a low fever. So i give Tylenol. This happens once ir twice a month. She wakes up ok. No shivers. No fever. It all starts at bed time. She does take a few meds late at night. Like forteo and a sleeping med, Clonazepam. Vitamin magnesium. I only see a few things online. Sepsis, or arthritis sepsis. Rheumatoid arthritis which she doesnt have, she has bad knees tho. She has ibs, and last year... pancolitis, was in the hospital for 4 days. High bp and then low bp. Anemia. Her bp is normally good. 112 over 75. I also say lupus as a possible culprit fir this random night thing. I dont think its sepsis because she isnt sick the next day.
A strange thing tho. Her procalcitonin was elevated last year at hospital. Was put on zosyn. 3 days later, still in the hospital her procalcitonin spike agian. A 3. 00. She had 2 broken feet. And they said she got pneumonia. Was sent home with zpack and amoxicillin
This does sound very odd. Everyone's body seems to begin to physically manifest symptoms differently. Also, there are so many different autoimmune diseases. If she has PPO insurance, I would see immunology and rheumatology. If she needs referrals, and her primary is too lazy to do their job fire them! Get a new one.
I have a positive ANA SLE and symptoms and still the Rheumatologist doesn't want to diagnose me with Lupus just because of the medication being life long. I have very mixed feelings about this. Not wanting the negative effects of the medication but also being scared of the Lupus going of and causing permanent damage.
I always have a positive ANA. But the last time I saw a rheumatologist he basically said call me when you get worse. My sister has been diagnosed with Parkinson’s but now we are really thinking it has been lupus all along. It is what it is. Doctors PRACTICE medicine. They keep practicing………
I hope you keep doing these videos because I live in Florida and because my positive ANA is not high enough and my positive RNP antibodies is not high enough. I’ve had symptoms for four years and can’t get a diagnosis or help.
Florida is so bad it seems like they actually work at it! This state is a disgrace to the entire medical community!!!
You can message me on fb i do know if 1 good rheumatologist down here.
@@SharriK1 I tried to find you on Facebook and I couldn’t find you. I went to two rheumatologist and one told me there was nothing wrong with me and I guess go have a good life. I was so angry I was shaking inside.
@@kdani11307982 search my full name Sharri Kring can’t miss the Italian flag on my cover photo lol.
This past year it has been getting worse in the pain and fatigue
Great video I was diagnosed in 1997 Negative ANA I was positive for Anti Ro antibodies so they first diagnosed me with sjogrens. I live in Florida my rheumatologist didn’t believe it was that so he kept testing me through the years my ANA didn’t become positive until years later mu compliment levels were low until the past few years. I been on Plaquenil for over 20 years I don’t know what it’s supposed to do. Prednisone left me with 3 compression fractures in my back . Now I have kidney involvement for which I’m taking benlysta (just started) so honestly I do understand how you feel. For years I would swell up and they didn’t worry about it. Thank you for the video it was very informative 🦋💜
I recently got my results back. Came speckled and at a 1:1280 range. Rheumatologist said there is a high chance of lupus. My next appointment is until June.
Sadly, they didn’t catch you until you have such a high ANA. I live in Florida just like this woman is talking about and I have all the symptoms of mixed connective tissue disease, but my ANA is a low positive and my antibodies is a low positive. Have anything. I’m just symptoms for four years!
I'm stuck behind gatekeepers... need surgery and I cnt see my surgeon for 7 months to even schedule. I'm considering put of stayed surgery as ive had to do before for endometriosis
Just read a great research paper about the fact the ANA changes From negative to positive over time. No one does this test every single day so we need to jump into right time to get a diagnosis or be "stably severe". I did ANA 1 in 3 laboratories 4 times during one month and the difference ? >1:3200 and negative xxddd this is so ridiculous
Think my endometriosis has been masking lupus for over a decade now. Getting ready to get some biopsy of my skin and nerves that have had nueropathy for years. Maybe this will tell if something else going on. My inflammation and c reative protein r in bloodwork but no ana. Had enlarged kidney years ago and on occasion a few other organs tgey reported as enlarged. Have pain, fatigue, muscles hurt so bad and ny joints, lesions on my feet and headaches and weakness and confusion, 4 years ago during endometriosis surgery found ny entire left side of my bowels attached to my abdominal wall covered in scars. Nueropathy in legs and back. Occasionally my nodes in neck and throat and my thyroid swell for few days. Lose circular to my fingers and toes and sometimes my left foot is so poor it can be an issue in the winter or swimming. 4 yrs ago in flare of what was endometriosis and i thinking lupus too i lost 70 lbs rapidly cudnt eat ir use bathroom and sliwly starving for 18 months while no one could tell us anything so i had surgery and found everything inside me as angry as a dragon.
I have endometriosis and i think lupus flare. Wait to even see obgyn let alone schedule surgery i need is 7 months just for apt.
I am currently ANA negative and highly dsDNA positive. Also SSA positive. Sed rate is high. Im in a lot of pain but in limbo
Hey I hope your doing good! I see this video is from a year ago. Ive been going through some strange things and a lot of it seems like it could be auto immune related. A few weeks ago I went through what I think could have been a flare up. Totally exhausted, nauseous, chills, fingers and toes just aching so bad and cold fingers to the point of turning purple under my nails. I had actual ulcers around my tonsils for a day only which was really strange. After a few days I got my energy back but I then got some blisters on the palm of my hand and fingers. Then a week ago my left index finger tip down to the knuckle got super swollen and painful I could hardly bend it. It lasted a couple days and went away. Ive always been going tthrough strange things coming and going throughout the years but lately things seem to be happening more and more and worse. I see my dr next week but I dont know how to bring it all up to her. I've always felt like something is going on but then I feel fine and dont think about it for a while. Then it starts up again. Ive been going through severe misophonia too which is maybe happening from feeling so awful most days.
I would tell your doctor exactly that, that you've been having these issues on and off and have felt something is going on for a while. I would also DEMAND a referral to rheumatology! Here's the problem: a lot of us wait 10 years or even longer to get a diagnosis. These doctors seem to think they know everything (even our own bodies better than we do 🙄) and don't really want to do their job a lot of the time. Womens health issues are often ignored or somehow blamed on our period. At the end of the day, it's us who ends up suffering, and it's our health. Take control of the situation before you get really sick!
@@SharriK1 Thank you! 🩷
My lupus has attacked my brain 1st I was diagnosed with epilepsy then I had a big stroke then had 4 seizures during my stroke the last one was a grand mal seizure in the ambulance while I was having a stroke this happened in 2018-2019 not sure of the date I was in the hospital and rehabilitation center for about a month or so it happened then covid happened and I didn’t finish rehab on my voice or memory then in 2022 I got covid and was found in my bed unresponsive was taken to the hospital again came back to life and now I can’t remember things anymore I forget names or what I’m talking about the doctor thinks it’s frontal lobes dementia so my lupus sucks it picked my brain to take my loved ones away from slowly by watching me sleether away from them I’m so upset tight now. I told all my 4 sons and my nephew who’s like my son and told all my 5 daughter In-laws just not my grandbabies and I’m only 56
I feel you so much, im so discouraged etc. I am ana neg. But pos for double stranded dna and c reactive protein. and I have been in moderate to severe pain since early teens and still dont have a disgnosis, you seem much further along then me, my next step is further testing to confim ana neg lupus and possibly polymyositis. Any advice so i can walk these doctors through their job?!
The first thing I would do is see if anyone on either side of you’re family has autoimmune disease, or similar symptoms. Also they rarely seem to look at C3, and C4 complement levels. You’re best bet from my experience is to find a rheumatologist that is aggressive in treatment and went to a good medical school. Don’t get discouraged it won’t serve you I know it’s hard.
@@SharriK1 my great grandmother had something wrong with her but they never found out what, but after interrogating my grandmother it does sound like whatever she had and I have are the same thing. Idk much about my father's side other than many of them died young from suicides and homicides which makes me wonder if they had chronic pain like me which contributed to the mental health issues. Thank you so much for posting videos and replying, no one really understands, so it means a lot really, thank you. What further tests should I have my doctor do to try to confirm ana neg lupus? I am trying to find good doctors but the struggle is real in north Alabama with Medicaid, so one approach is walking them through their job, I'm seriously considering med school somehow
I am in California and I am so desperate I have to wait two months to see a rheumatologist and I do have insurance
Omg, I know, it's so annoying waiting for an appointment for months, not knowing if they are actually going to help you. Sometimes, I would schedule more than one just in case. If one was good, I would cancel the other. I refuse to sit there feeling sick I don't have time to worry about some overpaid doctors feeling lol.
I can't find a good rhumy I feel like I'm always being put off like I'm crazy or something. One rhumy went as far to say I'm not diagnosing you to get disability what she didn't know is I had already been diagnosed . I needed a new rhumy because the previous one retired
My primary care physician thought I may have lupus but my Rhumatologist says its fibromyalgia. So for 25 yrs I get treated for pain and fatuige. My son feels the same as I do and his ANA was positive and he is anemic.
I can’t tell you how many times I’ve heard that line of bs from doctors! Fibro doesn’t cause lupus symptoms!!! 😤
I just recently got blood work. I suddenly got all symptoms of autoimmune. I have joint pain in every part of my body from my neck to my toes and chest pains. My Ana is negative so they won’t refer me to a rheumatologist and wants to send me to orthopedic instead. my doctor even said before my blood work that she would be very surprised if my Ana came back negative because she believes I have an autoimmune issue. My white blood count was pretty high though but everything else was fine ? All I know is I have so much pain that I can’t do daily activities and idk what to do now. I’ve been healthy and very active my whole life and have always been to the gym but now can’t even turn a doorknob because of the pain. Can barely walk.
What’s your current update?
@@jaco0712 hi it’s been almost a year. Since this comment, I was urgently referred to a rheumatologist July 2023. Some parts of my ANA came back positive. But my bloodwork was all over the place. Increasing white blood count. They are thinking I have lupus according to my symptoms. But booodwork is just too all over the place to specify that from RA or something else. I was put on hydroxychloroquine and methotrexate and am now able to live a normal life. I still have flare ups from time to time. But it has been helping me tremendously. My doctor still doesn’t have a set diagnosis just yet but everything still points to lupus. I’ve developed more butterfly rashes throughout the year randomly and had my first mouth ulcer recently. I was on steroids for about 8 months and was finally able to wean off a few months ago. For now I still get aches from time to time but overall much better. I continue to see my rheumatologist every 3 months with blood work and other testing. I’ve noticed my eyes are getting worse as well though. Not sure if that’s from my medication or the autoimmune itself.
Hi my husband has been diagnosed with auto immune disease n he has been losing weight past one year n he started having Alopecia from last 3 months all his antibodies were negative n his ANA is also negative couldn’t able to diagnose could you please suggest any tests
I would have a scalp sample tested. I did this when I was losing my hair in circular spots and having a lot of thinning. Also C3, and C4 complement, CH50, liver function, thyroid panel for sure! My lupus randomly attacks my thyroid. For family members, they have hoshimotos. The other thing I would do is cut as many chemicals out of his life as possible, especially in personal care products! Believe me there in everything it's horrifying. Sorry for the late response.
Did you ride a bike extensively or any type of repetitive exercise machine as the Elliptical?
No, it seems like a strange question.
I don't even know what to do anymore the rhumys I see keep saying oh it's your fibromyalgia or they go with those labs again
I have a negative ANA but blood in urine and high inflammation markers. Doctor says no autoimmune because ANA is negative. She will be sending me to get a kidney ultrasound and CBC but isn't doing CMP or seeing what they other levels are in the urine for protein or anything. I have told her multiple times how tired I am and she is going to have me do a sleep study. I sleep all night but feel like I haven't slept at all. It is very frustrating because I feel like no one can help me. I am hoping my kidneys will show something that makes them look further into what is going on. Have your white blood cells been low on and off over years?
Hey same symptoms and ana negative how are you now?
@@DeepakRajput2000 I’m doing really well on the medications I’m on now. Benlysta injections and Arava.
I have had blood and protein in my urine on and off but not since I’ve been on treatment. I think it might be a good idea to see a new rheumatologist.
@@SharriK1 Did your blood test come ANA positive?
@@DeepakRajput2000 No it’s still negative.
Sister, lemme tell you, down South was the worst for me. In Georgia I had my health insurance and that meant, apparently I was a soulless freak who didn't deserve medical care. Up North was only a bit better with insurance, in this way: I have lupus with rash, severe joint involvement AND ANA ALWAYS. Even more, I have anti-ds-DNA always. I explained that I am ALWAYS flaring, and since I have it ALWAYS it's ignored. I also found that I have to get a new Dx with every new rheumatologist. Every. F@#$ng one. They hold onto dead though it I'd lotto winnings. Rheumatologist suck and we suffer.
YES THEY DO!!!! I pray to god doctors are better in Europe.
Sharri K , I hope we both find some relief. I have been out of work completely for about two and a half weeks, unable to walk due to "end stage osteoarthritis" in my knees with lupus overlapping it. I've been flaring horribly since my mother's death on Oct 14th, which caused a cascade of stressors, pain, more stressors, etc. (Like it does 🙄). I've been calling and begging the rheumatologist for help. They reluctantly gave me an appointment for tomorrow a couple of weeks ago. They are useless. I'm gonna get new knees, flare more, take steroids, and then cleanup my diet (which does help just a bit), and hope it doesn't kill me. I hope it doesn't you either. TH-cam suggested I see this, and I'm I am so angry for you. I'm wishing some good luck for us both. Take care and thanks for sharing your story. I think it will help.
@@cynthiapotter2698 You may want to look into stem cell treatment for your knees, and other joint issues. I know the Duke Lupus Clinic in North Carolina is doing this! You can also look into getting it done outside the US like I am. Long term steroid use is really bad for your endocrine system and can even make Osteoarthritis worse.
@@SharriK1 , I will check it out. I am scheduled for my first knee replacement on Feb 14th.
Rheumatologists have been the most worthless doctors I've had to work with. It's like they know nothing about their specialty and are afraid to take a tiny step. "You are two points short of me being able to diagnosis you by ANA." And they don't examine you anymore. They stay 10 feet away from you and never show any signs of curiosity.
It's taken me ten years for homogeneous to show up... And even then I am only 1:65
My b12 is always low. I am always tired. I get rashes and they constantly think it’s lupus. They test me and it is a negative Ana. They they test me for
Sjogrens. I have been diagnosed with psoriasis then none of the meds work. Only prednisone will work enough in a high dose to lower the rash. Then I get tingling in my leg and burning. They now want me to go and get and emg done for neuropathy. I constantly have
High eosinophil levels. There was blood in my urine, low vitamin d, I constantly feel like just crappy. I’m so sick of all of these tests and not knowing what is wrong here. I’m wondering what is going on. You start
To feel a bit nuts to be honest. Sometimes I will feel off balance and I have so much anxiety for so long. I don’t know. Then the rheumatologist said oh you have rheumatoid arthritis because of the psoriasis. What the heck??? Oh and then I saw a hematologist because of inflammation. They tested me for cancers etc. all came
Back thankfully ok. It’s non stop. Now they are saying emg and maybe a kidney scan.
Please advocate for yourself! Please. Doctors aren’t always right and You’re not crazy.
What about hydrocodquin
I’m so pissed at the doctors my mother died of lupus when I was 15 then my husband committed suicide in 98 me with our two kids it brought out all of this…. Health problem I’ve been told I can’t say you have it but I can’t say you don’t in my 30s I was 32 when he committed suicide
We need answers these doctors care about nothing but their bank accounts! 😤