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.
❤ same for me and fasting and praying helps alot 🙌🏼💯 my gynecologist is the one who found out that I have several autoimmune diseases and alot of inflammatory markers so can't alot of the meds prescribed it makes more symptoms and me worse.... I have so many things going on inside everyone thinks I'm lieing or just depressed..... am here if you need someone to talk to 💜💐
I'm so happy to find you. I was just diagnosed last Wednesday with Lupus after 2 years of pain and fighting my doctors. It crazy I lost 100lbs to get healthy was in the gym daily. Until I couldn't even lift a 10lb weight. 😪 It has been a crazy ride. I'm so happy to find you.
I'm so sorry! I just am seeing this! I'm so glad you know the answer! Even though it's a scary diagnosis. It is nice to know we are absolutely crazy! Lol. It will get better and we will embrace our new normal. Hang in there!
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.
My ANA is positive 1:80, signs and symptoms extremely similar to this vids, but inflammation markers and the rest if my bloodwork’s perfect, so now I’m crazy 🤷🏽♀️
Your so right! I have every single symptom of lupus but since I don’t have a positive ANA then I can’t be diagnosed with lupus. My other blood work and urine points do lupus also. I have been misdiagnosed with 2 other conditions I didn’t end up having. Idk what to do at this point!! Beyond frustrating! I just want to feel better so I have some quality of life! I have no quality of life at this point in time.
@@MindyMontes75 I have the same thing going on. My ANA is always negative, but have had all of these symptoms for over 10 years. So much gaslighting by doctors and hospitals.
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. So sorry, I just saw this. It's super hard to keep determined. I feel the frustration you are having. The body changing is very difficult. I'm going thru that the last 1.5 years. But for me, I had to let that body go and shift my mind to a better quality of life. It does get better! We just have to keep positive. As hard as that is, cuz I have had some very low times. We are humans. Just give yourself Grace!
Hello my dear so happy you share your experience,I was diagnosed with the same lupus about 23 years ago, I have been taking hydroxychloroquine 200 mg since, about 5year ago I notice my memory wasn't the same so I give up driving very forgetful. I also have a daughter that passed away while she was pregnant because she had the lupus
It's so nice to meet you! And you give me so much inspiration that it gets better for sure! I'm so sorry for your loss of your daughter and grand child. I can't imagine:(
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
I have ana homogenous 1:640 and speckled 1:80. My dr says it can’t be lupus. I have all the symptoms of sjogrens and lupus.. been so sick in the er, I can’t even walk up my own stairs in my house. Don’t know what to do.
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 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 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.
I'm so glad you advocated for yourself. You absolutely start to feel crazy because we trust Dr's to do the right thing. But man, this has taught me to never trust what is said. Like cookie cutter medicine needs to go! I was told all the same things. How did it turn out mama? Do you like the new Dr? Sending you positive vibrations. I'm going to do an update video this week. Alot going on.
I haven't seen the rheumatologist yet but did have abnormal ana through my dr doing lood work...glad to know there are others with dizziness! I am so dizzy and lightheaded some days I feel as though I will not get thru the day. Can't get into the rheumatologist for 4 more mouths....everyday Is a different symptom
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! ❤
Thank-you for sharing your story. Some of the symptoms I've had are similar to yours. I had my hips lock up after only a 1-hour walk in the woods one time. Insane how sometimes I can walk for 4 hours and other times can barely do any physical activity at all. And the muscle weakness washing hair or lifting light weights. Sometimes I'm too weak to put my hair in a pony tail or lift my arm to brush my teeth. We are all in this together, though! I'm so thankful for the online spoonie community!
Yes! It is incredibly frustrating! I am still navigating my new normal! The fatigue is the worst part for me to accept. I can totally understand the ponytail issue. Lol damn arms feel 800lbs. Lol I'm excited to meet 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!
Just two words: Goodbye Lupus book by Brooke Goldner, thank me later. A had very similar story like you, except i have SLE with kidney inflammation, lupus nephritis. After many months of Hell i can say I'm very close to my old self, no muscle pain, enery almost like before lupus. I'm back in the gym. And kidney disease in complete remission, zero medication. Good luck, and believe me you'll push trough this.
Oh wow! So you were a hot mess!! I can't imagine all 3. Scary. I'm in the process of cutting foods one at a time now. I know nutrition plays a huge role. Thank you so muvh. I'll look it up now!
Hi what did you do to get in remission? Because the medicines they offer you to take are just ridiculous and scary especially the dude effects. What helped you with lupus nephrtis?
Thank you for sharing this. I just finally got a doctor to listen to me after 7 years of fighting doctors and telling them that I have Hashimotos. She rediagnosed me with Hashimotos, I then brought up all my other symptoms and she is testing me for Lupus now. Symptoms I've had since the birth of my now 6 year old and were explained away as "allergies" by everyone else
Thank you for sharing your story! I had to comment because I've been having some weird mysterious health stuff going on, but I also was recently diagnosed with ADHD. That alone has been life changing, and I think that validation and empowerment has led to me seeking answers for the other issues. I really appreciate seeing content that I can actually relate to. ❤
Omg thank you!!! Girl. I got diagnosed with ADHD at 41! I feel you!!!! What kind of stuffs been goi g on?! Fingers crossed for you!! Validation is huge !!!
@@DreamCatcherFitness4u So many random things! Some have been long term and some have just started happening. One thing that stood out from your video for me is the electrical shock feeling you described. Those were my exact words when I was explaining it to my husband. Like a random half numb, half electrical shock down one of my limbs. Feeling poor circulation in my fingers. Random sharp chest pains, heart arrhythmia, swollen lymph nodes all over the place, mild shortness of breath, a weird rash that popped up once, issues with my blood sugar crashing, almost passing out from dizziness when I stand up, etc etc etc. It also hit home when you mentioned knowing it’s not normal when you can’t do stuff like pick up and hold your child. My youngest is three and it feels like a huge task just carrying him down the porch steps to the car sometimes. I’m at a point where I know something isn’t right, just waiting on my doctor to figure it out. It’s exhausting feeling like I have to hardcore advocate for myself in healthcare. I’m so glad that you were able to get answers!
Oh man. That sounds so familiar. Look up sjogrens too!! I got that diagnosis the same day also. Alot of the symptoms overlap with a.i disease. Have u had an apt with a rheumatologist yet? You can private message me on ig if that's easier. It's @dreamcatcherfitness4u
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 😢
Hello:) I'm so sad you have to deal with this. It's incredibly frustrating to get a Dr to listen! It's been a hell of 2 yrs. I'm on Saphnelo now. Come on remission. I need to do an update! I'd love an update! I'm hoping you get some answers!
@DreamCatcherFitness4u I've been ill for 4 years and had loads of mri's from orthopaedic department but they are all clear. I had a major car accident in 2008 and they are just putting it down to that. But I keep saying what does that have to do with dropping things, no strength, no memory, no energy, toilet issues, nerve issues, losing feeling in hands and feet (going completely white) oh and so much more. My blood tests show I have ccp antibodies but I've not been told why?
Thank you for sharing your story. I'm sorry you've had to experience all of the awful pain & struggles that come along with Lupus (& other health issues). It does help to hear someone else describe experiencing the same pain & symptoms that you yourself have experienced. It helps to know that you are not alone in this.
I was diagnosed in Dec. 2018 with Lupus SLE and R.A. then the following Easter time 2019 I was also diagnosed with Scleroderma and Fibromyalgia (along with some other fun stuff). One of the most difficult parts of everything has been not having anyone to talk to that understands what having these conditions is like. It's taken me awhile to find anyone (even online) who is experiencing these awful conditions. I think what you are doing is really great work.
Thank you so much!! That's alot for sure. I'm sorry that's your reality. It's very different when we feel so alone and like no one understands what it's like for us. I'm trying to figure out how to link my other socials here. I don't post as much here as I should!
Hi my Name is Rita I appreciate you so very much for sharing your Videos I have Lupus myself really been looking for someone I can relate to Lupus sucks but I’m so grateful to be alive ❤️❤️
I believe it is something you are ingesting that causes these flares. I have RA which only rears its ugly head when I consume nuts and seeds. At the start of the pandemic, during the lockdown, I was eating a lot of peanut butter sandwiches. Unbeknownst to me, that is what was causing the excruciating pain in my thumbs and index fingers. I couldn't hold my dog's leash, use a can opener or even turn a doorknob. Forget trying to clip my toenails. An elimination diet showed immediate improvement. I do okay with the dreaded nightshades, for which I am most grateful, because I love them.
Oh I agree food is huge!!! I'm waiting on my food sensitivity testing!!!I know garlic is a huge trigger for me personally. I'm glad you figured it out!!!
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.
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
You've got this! Auto immune issues suck ass! flare ups are the worst for sure and remission times are always nice! We have very similar stories! Great video!
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
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.
Thank you . I have been sick for 3 years. My symptoms are severe fatigue and joint pain. My rheum now is toying with a lupus diagnosis even though I dont have the markers and many of the symptoms . I am so scared. I have tried so. many meds. currently on plaquinl but thats not a home run yet. Thanks for your info. its a mind game as much as anything else . Hopefully I can get stable enough to work out again !
Hi CF, I have Lupus, Sjogrëns, non alcoholic fatty liver, and a very long list of allergies (19 food, mostly common foods, and 6 environmental). Talk to your doctor about going holistic. I have gotten so much better through food choices, exercise, sleeping longer, and listening to my body. Friends I have with Lupus on meds are on a list of meds to deal with side effects of meds, or, chemotherapy after their body has gotten use to their original meds and so they no longer work for them. I truly feel that as I am getting better, they are getting worse in time. Meds are a quicker way, but a less reliable way to feeling better in the long run. I know at least one other who has Lupus and has gone the holistic route. You’d never know she was sick. All my best to you on your journey.
Thank you for sharing. I can really relate to your story. I had a bad neurological flare a few months ago. MRI’s came back clear. Been having joint pain, fatigue and a laundry list of symptoms for years! I know you must feel a little sense of relief knowing you’re not going crazy bc after all nobody knows your body like you. I hope you keep feeling better ❤️
Thank you! Slowly but surely and one day at a time! Did you get a diagnosis? Man , it makes you feel crazy, and then it's all validated!!! So relief is absolutely how I felt. Like woo hoo I'm not nuts 🤣🤣🤣
@@DreamCatcherFitness4u I already know!! So glad you for an answer! No, I haven’t got a diagnosis. It’s very frustrating. Luckily MS was just ruled out. But all of the other lupus like symptoms are still a mystery at this point. Positive Ana, was told from a rheumatologist that I should be monitored for lupus but didn’t get a formal diagnosis. Tired and frustrated.
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'm sorry you have to deal with that. It makes me so angry that we have to deal with that! I've dealt with crap too. I'm fortunate enough to have a great family support too. Have you had your new apt yet? If so do you have any answers?
I have the appointment scheduled 3 days before my birthday next month. It always seems like something is always happening to me on my birthday. Yesterday and Saturday were the worst pain I have had. All I was able to do was be in a ball on my bed a cry when it just got to much. I believe that I know when I got SLE which was in 09 right after I got sick with MRSA in my spine. I have been able to work out some of what causes the flare up. Like the last 2 days I was able to get much sleep and I know that I have to be careful with going outside without wearing the right stuff because if I don't I start having swelling in my face and pain all over and then some flares are from what I eat. I have am trying to get a game plan for finding out what I can get have. My problem with food is that I need some recipes to help because I haven't been able to eat much. I just had a question pop up it's about the memory problem. And right I can't remember the question and I think it has to do with how tired I am. If I remember I w
Our story's are nearly identical...I was just diagnosed about 4 months ago but I've been living with it for at least 10 years. I had been telling my doctors for years that there was something wrong and they would ALWAYS test my thyroid and hormone levels. The last time I went in I told them no more. I said "this is autoimmune, test me for an autoimmune disease, If I'm wrong then you can check my thyroid and my hormones again...I was so relieved to get a diagnosis because it meant I wasn't crazy and I wasn't lazy or depressed, my sore body wasn't just me over training or being a puss ( I was always telling myself to toughen up) . If I hadn't put my foot down and said no more, we'd still be on the same hamster wheel. It shouldn't be like this, it's so infuriating.
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?
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. 🙏🏼💪🏼
Hello, I had multiple Avise panel done. 2 specific blood markers came up positive. I'll look them up for you. I can't remember. Lol I need yo do an update video
I’ve had sores on my tongue for about 6 months and they do not go away, ever. Nobody can figure out what they are and why I have them. If others have had this can you tell me what the doctor said about it? Thank you so much for this video!!
I'm so sorry you are dealing with that! 6 months!! Have they biopsied it? I get mouth and nose sores, but my other spoonie friends get sores in the mouth and tongue.
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
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 will find out if my year old chest pain and right side pain are lupus. Almost a year of doctors telling me my heart and liver is good. Nothing anywhere that would cause pain. A low white blood count and I am getting my test result.
Fingers crossed you figure it out. I'm glad you are advocating for yourself! I actually started having chest pain. Went to e.r. they said I'm fine. I guess the tiny muscle fibers get inflamed on me and it's always on my right side too. Good luck mama!!
@@DreamCatcherFitness4u they have been telling me for months I have anxiety chest. I have been taking anti depression meds. No wonder they never worked.
When we have chronic daily pain like we do it absolutely affects us mentally. My anxiety was the worse it's been in my life. It is under control now with meds too. But we know the difference between anxiety chest and somethings not right! Hang in there
I did within a few weeks. Have you told your Dr? They added a few drugs to mine. Unfortunately I failed them. They made me way way worse. I'm currently waiting to get on Saphnelo. You might need a second med. Alot of us are on multiple meds Unfortunately
I was 9. At that time, the docs weren't sure how I came down with ITP. Now, I am waiting to see the Rheumatologist to test for RA and SLE. I have a diagnosis of Discoid Cutaneous Lupus. Thank you for sharing your story.
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.
❤ same for me and fasting and praying helps alot 🙌🏼💯 my gynecologist is the one who found out that I have several autoimmune diseases and alot of inflammatory markers so can't alot of the meds prescribed it makes more symptoms and me worse.... I have so many things going on inside everyone thinks I'm lieing or just depressed..... am here if you need someone to talk to 💜💐
I'm so happy to find you. I was just diagnosed last Wednesday with Lupus after 2 years of pain and fighting my doctors. It crazy I lost 100lbs to get healthy was in the gym daily. Until I couldn't even lift a 10lb weight. 😪 It has been a crazy ride. I'm so happy to find you.
I'm so sorry! I just am seeing this! I'm so glad you know the answer! Even though it's a scary diagnosis. It is nice to know we are absolutely crazy! Lol.
It will get better and we will embrace our new normal. Hang in there!
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.
My ANA is positive 1:80, signs and symptoms extremely similar to this vids, but inflammation markers and the rest if my bloodwork’s perfect, so now I’m crazy 🤷🏽♀️
Your so right! I have every single symptom of lupus but since I don’t have a positive ANA then I can’t be diagnosed with lupus.
My other blood work and urine points do lupus also.
I have been misdiagnosed with 2 other conditions I didn’t end up having.
Idk what to do at this point!! Beyond frustrating! I just want to feel better so I have some quality of life!
I have no quality of life at this point in time.
@@MindyMontes75 I have the same thing going on. My ANA is always negative, but have had all of these symptoms for over 10 years. So much gaslighting by doctors and hospitals.
@ I am so sorry your suffering too. ❤️
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. So sorry, I just saw this. It's super hard to keep determined. I feel the frustration you are having. The body changing is very difficult. I'm going thru that the last 1.5 years. But for me, I had to let that body go and shift my mind to a better quality of life. It does get better! We just have to keep positive. As hard as that is, cuz I have had some very low times. We are humans. Just give yourself
Grace!
Thank you for making this video. You have spoken hope into my heart. ♥️
Hello my dear so happy you share your experience,I was diagnosed with the same lupus about 23 years ago, I have been taking hydroxychloroquine 200 mg since, about 5year ago I notice my memory wasn't the same so I give up driving very forgetful. I also have a daughter that passed away while she was pregnant because she had the lupus
It's so nice to meet you! And you give me so much inspiration that it gets better for sure! I'm so sorry for your loss of your daughter and grand child. I can't imagine:(
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
I have ana homogenous 1:640 and speckled 1:80. My dr says it can’t be lupus. I have all the symptoms of sjogrens and lupus.. been so sick in the er, I can’t even walk up my own stairs in my house. Don’t know what to do.
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 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 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.
I'm so glad you advocated for yourself. You absolutely start to feel crazy because we trust Dr's to do the right thing. But man, this has taught me to never trust what is said. Like cookie cutter medicine needs to go! I was told all the same things. How did it turn out mama? Do you like the new Dr? Sending you positive vibrations. I'm going to do an update video this week. Alot going on.
I haven't seen the rheumatologist yet but did have abnormal ana through my dr doing lood work...glad to know there are others with dizziness! I am so dizzy and lightheaded some days I feel as though I will not get thru the day. Can't get into the rheumatologist for 4 more mouths....everyday Is a different symptom
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-- very well done!
Thank-you for sharing your story. Some of the symptoms I've had are similar to yours. I had my hips lock up after only a 1-hour walk in the woods one time. Insane how sometimes I can walk for 4 hours and other times can barely do any physical activity at all. And the muscle weakness washing hair or lifting light weights. Sometimes I'm too weak to put my hair in a pony tail or lift my arm to brush my teeth. We are all in this together, though! I'm so thankful for the online spoonie community!
Yes! It is incredibly frustrating! I am still navigating my new normal! The fatigue is the worst part for me to accept. I can totally understand the ponytail issue. Lol damn arms feel 800lbs. Lol I'm excited to meet you!
@@DreamCatcherFitness4u thanks, I'm excited to connect with you also! And yea it can feel like I have 50 pound weights on each arm lol.
@@laurennicole-spooniebusine1115 I agree!
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!
Just two words: Goodbye Lupus book by Brooke Goldner, thank me later. A had very similar story like you, except i have SLE with kidney inflammation, lupus nephritis. After many months of Hell i can say I'm very close to my old self, no muscle pain, enery almost like before lupus. I'm back in the gym. And kidney disease in complete remission, zero medication. Good luck, and believe me you'll push trough this.
Oh wow! So you were a hot mess!! I can't imagine all 3. Scary. I'm in the process of cutting foods one at a time now. I know nutrition plays a huge role. Thank you so muvh. I'll look it up now!
Hi what did you do to get in remission? Because the medicines they offer you to take are just ridiculous and scary especially the dude effects. What helped you with lupus nephrtis?
Yes, curious about remission also??
Thank you for sharing this. I just finally got a doctor to listen to me after 7 years of fighting doctors and telling them that I have Hashimotos. She rediagnosed me with Hashimotos, I then brought up all my other symptoms and she is testing me for Lupus now. Symptoms I've had since the birth of my now 6 year old and were explained away as "allergies" by everyone else
It's so scary when we see it in our kids. My 15 yr old is having sympt9ms also. Hang in there mama . Please keep me posted !!! Keep fighting!!
Thank you for sharing your story! I had to comment because I've been having some weird mysterious health stuff going on, but I also was recently diagnosed with ADHD. That alone has been life changing, and I think that validation and empowerment has led to me seeking answers for the other issues. I really appreciate seeing content that I can actually relate to. ❤
Omg thank you!!! Girl. I got diagnosed with ADHD at 41! I feel you!!!! What kind of stuffs been goi g on?! Fingers crossed for you!! Validation is huge !!!
@@DreamCatcherFitness4u So many random things! Some have been long term and some have just started happening. One thing that stood out from your video for me is the electrical shock feeling you described. Those were my exact words when I was explaining it to my husband. Like a random half numb, half electrical shock down one of my limbs. Feeling poor circulation in my fingers. Random sharp chest pains, heart arrhythmia, swollen lymph nodes all over the place, mild shortness of breath, a weird rash that popped up once, issues with my blood sugar crashing, almost passing out from dizziness when I stand up, etc etc etc. It also hit home when you mentioned knowing it’s not normal when you can’t do stuff like pick up and hold your child. My youngest is three and it feels like a huge task just carrying him down the porch steps to the car sometimes. I’m at a point where I know something isn’t right, just waiting on my doctor to figure it out. It’s exhausting feeling like I have to hardcore advocate for myself in healthcare. I’m so glad that you were able to get answers!
Oh man. That sounds so familiar. Look up sjogrens too!! I got that diagnosis the same day also. Alot of the symptoms overlap with a.i disease. Have u had an apt with a rheumatologist yet? You can private message me on ig if that's easier. It's @dreamcatcherfitness4u
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 😢
Hello:)
I'm so sad you have to deal with this. It's incredibly frustrating to get a Dr to listen! It's been a hell of 2 yrs. I'm on Saphnelo now. Come on remission. I need to do an update! I'd love an update! I'm hoping you get some answers!
@DreamCatcherFitness4u I've been ill for 4 years and had loads of mri's from orthopaedic department but they are all clear. I had a major car accident in 2008 and they are just putting it down to that. But I keep saying what does that have to do with dropping things, no strength, no memory, no energy, toilet issues, nerve issues, losing feeling in hands and feet (going completely white) oh and so much more. My blood tests show I have ccp antibodies but I've not been told why?
Thank you for sharing your story. I'm sorry you've had to experience all of the awful pain & struggles that come along with Lupus (& other health issues). It does help to hear someone else describe experiencing the same pain & symptoms that you yourself have experienced. It helps to know that you are not alone in this.
Thank you! I appreciate this so much. That's why I'm sharing for sure. Hoping we can form a solid community for support and uplifting of others. !
I was diagnosed in Dec. 2018 with Lupus SLE and R.A. then the following Easter time 2019 I was also diagnosed with Scleroderma and Fibromyalgia (along with some other fun stuff). One of the most difficult parts of everything has been not having anyone to talk to that understands what having these conditions is like. It's taken me awhile to find anyone (even online) who is experiencing these awful conditions.
I think what you are doing is really great work.
Thank you so much!! That's alot for sure. I'm sorry that's your reality. It's very different when we feel so alone and like no one understands what it's like for us. I'm trying to figure out how to link my other socials here. I don't post as much here as I should!
Hi my Name is Rita I appreciate you so very much for sharing your Videos I have Lupus myself really been looking for someone I can relate to Lupus sucks but I’m so grateful to be alive ❤️❤️
I'm sorry! I just saw this! I appreciate you!! Thank you !! And yes , very grateful too!!!!
I believe it is something you are ingesting that causes these flares. I have RA which only rears its ugly head when I consume nuts and seeds. At the start of the pandemic, during the lockdown, I was eating a lot of peanut butter sandwiches. Unbeknownst to me, that is what was causing the excruciating pain in my thumbs and index fingers. I couldn't hold my dog's leash, use a can opener or even turn a doorknob. Forget trying to clip my toenails. An elimination diet showed immediate improvement. I do okay with the dreaded nightshades, for which I am most grateful, because I love them.
Oh I agree food is huge!!! I'm waiting on my food sensitivity testing!!!I know garlic is a huge trigger for me personally. I'm glad you figured it out!!!
@@DreamCatcherFitness4u Oh please do post a video with the results.
I'll definitely post a video!!
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.
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
Thank you! It takes a few weeks, but hopefully you'll notice!!! Keep fighting the good fight! I'll be doing an update soon
Im so appreciative of you and your courage to document and being so real!
Thank you babe. I really appreciate you!!!
You've got this! Auto immune issues suck ass! flare ups are the worst for sure and remission times are always nice! We have very similar stories! Great video!
Thank you Angie! It's sad how long it takes for our diagnosis' . Glad you fought!!! I'm in remission right now I think. Very minimal issues.
@@DreamCatcherFitness4u it really is ridiculous! So happy to hear you are in remission, I savor those times like no other! ❤
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
Thank you for sharing
Thank you for watching!
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.
I'm sorry I'm just seeing this! How did it turn out? We know our bodies so I'm glad you're advocating for yourself. Positive vibes your way
Thank you for sharing. I had Graves. I'll know in 5 days for sure....
I hope you get answers!
Did u find out
Thank you . I have been sick for 3 years. My symptoms are severe fatigue and joint pain. My rheum now is toying with a lupus diagnosis even though I dont have the markers and many of the symptoms . I am so scared. I have tried so. many meds. currently on plaquinl but thats not a home run yet. Thanks for your info. its a mind game as much as anything else . Hopefully I can get stable enough to work out again !
Hi CF, I have Lupus, Sjogrëns, non alcoholic fatty liver, and a very long list of allergies (19 food, mostly common foods, and 6 environmental). Talk to your doctor about going holistic. I have gotten so much better through food choices, exercise, sleeping longer, and listening to my body. Friends I have with Lupus on meds are on a list of meds to deal with side effects of meds, or, chemotherapy after their body has gotten use to their original meds and so they no longer work for them. I truly feel that as I am getting better, they are getting worse in time. Meds are a quicker way, but a less reliable way to feeling better in the long run. I know at least one other who has Lupus and has gone the holistic route. You’d never know she was sick.
All my best to you on your journey.
I'm so sorry i just saw this. How are things? Did you get answers? Luous is different for everyone, so labs sometimes don't give us answers.
Thank you for sharing. I can really relate to your story. I had a bad neurological flare a few months ago. MRI’s came back clear. Been having joint pain, fatigue and a laundry list of symptoms for years! I know you must feel a little sense of relief knowing you’re not going crazy bc after all nobody knows your body like you. I hope you keep feeling better ❤️
Thank you! Slowly but surely and one day at a time! Did you get a diagnosis? Man , it makes you feel crazy, and then it's all validated!!! So relief is absolutely how I felt. Like woo hoo I'm not nuts 🤣🤣🤣
@@DreamCatcherFitness4u I already know!! So glad you for an answer! No, I haven’t got a diagnosis. It’s very frustrating. Luckily MS was just ruled out. But all of the other lupus like symptoms are still a mystery at this point. Positive Ana, was told from a rheumatologist that I should be monitored for lupus but didn’t get a formal diagnosis. Tired and frustrated.
Be your biggest advocate. I'd love to keep updated on your journey! I'm glad you have seen a rheumatologist!!!
@@mayarenae85 I'm on other platforms if you ever want to message me. Social support is huge when it feels so lonely.
@@DreamCatcherFitness4u Yes, I’m definitely trying to advocate for myself. I’ll keep you posted, thanks so much!
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'm sorry you have to deal with that. It makes me so angry that we have to deal with that! I've dealt with crap too. I'm fortunate enough to have a great family support too. Have you had your new apt yet? If so do you have any answers?
I have the appointment scheduled 3 days before my birthday next month. It always seems like something is always happening to me on my birthday. Yesterday and Saturday were the worst pain I have had. All I was able to do was be in a ball on my bed a cry when it just got to much. I believe that I know when I got SLE which was in 09 right after I got sick with MRSA in my spine. I have been able to work out some of what causes the flare up. Like the last 2 days I was able to get much sleep and I know that I have to be careful with going outside without wearing the right stuff because if I don't I start having swelling in my face and pain all over and then some flares are from what I eat. I have am trying to get a game plan for finding out what I can get have. My problem with food is that I need some recipes to help because I haven't been able to eat much.
I just had a question pop up it's about the memory problem. And right I can't remember the question and I think it has to do with how tired I am. If I remember I w
You literally are describing 99% of my symptoms except the nose sores.
I hope you get some answers!!!
Our story's are nearly identical...I was just diagnosed about 4 months ago but I've been living with it for at least 10 years. I had been telling my doctors for years that there was something wrong and they would ALWAYS test my thyroid and hormone levels. The last time I went in I told them no more. I said "this is autoimmune, test me for an autoimmune disease, If I'm wrong then you can check my thyroid and my hormones again...I was so relieved to get a diagnosis because it meant I wasn't crazy and I wasn't lazy or depressed, my sore body wasn't just me over training or being a puss ( I was always telling myself to toughen up) . If I hadn't put my foot down and said no more, we'd still be on the same hamster wheel. It shouldn't be like this, it's so infuriating.
Wow we are exactly the same. I am so proud of you for advocating for yourself. It's so hard to do!
thank you ❤
Thank you for sharing your story. I’m going to get checked my niece has Lupus and I’ve been physically been feeling like crap forever. Love you girl
Keep me posted mama. Thank you!!! Sending prayers!!! Let me know what they say!!!
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?
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. 🙏🏼💪🏼
Hello, I had multiple Avise panel done. 2 specific blood markers came up positive. I'll look them up for you. I can't remember. Lol I need yo do an update video
Thank you for this. I have just found out I have lupus & this explains some of my symptoms.
I’ve had sores on my tongue for about 6 months and they do not go away, ever. Nobody can figure out what they are and why I have them. If others have had this can you tell me what the doctor said about it? Thank you so much for this video!!
I'm so sorry you are dealing with that! 6 months!! Have they biopsied it? I get mouth and nose sores, but my other spoonie friends get sores in the mouth and tongue.
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
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.
Wow. I also smell cigarette smoke when no one is around or smoking. I’m waiting on results as well.
Cause my body is a jerk 😆😆 can so relate 🥴😆
Lmao!!! Right. Damn thing needs to get the memo and act right!!!
I have adhd and hashimotos and I'm waiting on test results Friday I should know
Oh keep me posted. If ya have 1 you're more likely to get more. What testing did you get done?
I will find out if my year old chest pain and right side pain are lupus. Almost a year of doctors telling me my heart and liver is good. Nothing anywhere that would cause pain. A low white blood count and I am getting my test result.
Fingers crossed you figure it out. I'm glad you are advocating for yourself! I actually started having chest pain. Went to e.r. they said I'm fine. I guess the tiny muscle fibers get inflamed on me and it's always on my right side too. Good luck mama!!
Sorry. Sir!!!!
@@DreamCatcherFitness4u they have been telling me for months I have anxiety chest. I have been taking anti depression meds. No wonder they never worked.
When we have chronic daily pain like we do it absolutely affects us mentally. My anxiety was the worse it's been in my life. It is under control now with meds too. But we know the difference between anxiety chest and somethings not right! Hang in there
@@DreamCatcherFitness4u exactly. My chest is getting worse daily. I can get by without codine. I am a mess right now
I have been on Hydroxychloroquine for over 2 months now and see no difference. Was curious if you have felt a difference now?
I did within a few weeks. Have you told your Dr? They added a few drugs to mine. Unfortunately I failed them. They made me way way worse. I'm currently waiting to get on Saphnelo. You might need a second med. Alot of us are on multiple meds Unfortunately
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.?
Hello. I was 27 I believe when I was diagnosed. It was the first of my autoimmune diagnosises. Thank you for the question!
I was 9. At that time, the docs weren't sure how I came down with ITP. Now, I am waiting to see the Rheumatologist to test for RA and SLE. I have a diagnosis of Discoid Cutaneous Lupus. Thank you for sharing your story.
My rheumatologist told me itp runs hand in hand with lupus alot. Hope you get answers!
@@DreamCatcherFitness4u I was thinking about googling itp and relationship to lupus. Thanks for the information. I hope as well.
You must have flipped the video around because you keep referring to your "right side" and then pointing to your left side.
The camera always inverts the image. Lol its my right. Promise
You're going through premenapause as well darling.