My Lupus Diagnosis Story Part 1

Рет қаралды 8,491

5 жыл бұрын

Today I am sharing something personal. I am sharing my life story when I was diagnosed with Lupus. I want to share this to help others that are in the stages of being diagnosed so that they are not feeling isolated and alone. I was diagnosed 25 years ago when I was a teenager at that time there was not a lot of information about Lupus available for me and what I did find was scary, it made me feel isolated and scared. I hope this video helps anyone either in the process of being diagnosed with a chronic illness or already diagnosed to know they are not alone in this Journey. For the purpose of not making this video too long it is broken up into 2 Parts this is part 1.
Part 2: • My Lupus Diagnosis Sto...
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Пікірлер: 50

@debbiehephner2459 2 жыл бұрын

Thank God I found you this morning, on my way to the doctors. They are checking me for Lupus.

@AlwaysLoveYou 4 жыл бұрын

Funny how doctors are still reluctant to think something could be wrong and be so dismissive. I had that issue with my first rheumatologist. He misdiagnosed me too

@PattisLupusJourney 4 жыл бұрын

Hi Ashley!

@venusbeautygirl 3 жыл бұрын

Typical Doctor's

@wisetransfomation4927 2 жыл бұрын

Thank you for sharing. I was diagnosed just before I graduated high school too and I was very active in sports. I got married and had two beautiful boys after lupus.

@ivyslupuslife5128 4 жыл бұрын

I finally got my lupus diagnosis in 2016 after dealing with symptoms for years...i also started a KZfaq channel Ivy's LupusLife to tell my complex medical story

@PattisLupusJourney 4 жыл бұрын

Hi Ivy welcome to the KZfaq community I look forward to checking out your channel.

@kirtisoma3211 3 жыл бұрын

I appreciate this video my blood work came back clear but I feel lots of pain and tierd , the worst is when I wake up in the morning and my whole body is filled with pain . I just lay there even though I knew I needed to get out of bed and start my day .

@PattisLupusJourney 3 жыл бұрын

I know that feeling. Keep a journal of your symptoms and continue to update your doctor. You know your body best and are the your best advocate. Stay strong

@belvinsmith1891 3 жыл бұрын

I've been spending lots of money weekly on buying the popular Supplements just to suppress my Lupus outbreaks as prescribed to me in the hospital. Anyone who has LUPUS can attest this, with all the pains and embarrassing symptoms. Unfortunately, I have found out that those hospital recommended products are frequently not effective at taking care of the problem but rather make you spend all your money. Until I met DR.AVE UDUOGIE, the Herbalist. His herbal remedy will get to the root of the cause and cure you permanently rather than suppress outbreaks with Medical pills which Causes serious damage to the body. And you will be happier, healthier, and outbreak free. He also has herbal remedies that can cure HIV, HPV, hepatitis and so on. Contact DR.AVE UDUOGIE on his email Curingstdswithherbs@gmail.com or WhatsApp/Call +1(978)4896010. You can contact him and get a permanent cure to your genital and oral Herpes,HIV Aids, Lungs cancer,HPV,Lupus,Cold sore, Blood Cancer,Diabetics,Herpes virus E.T.C..

@danaea6344 3 жыл бұрын

My blood work came back clear as well. I have been dealing with lupus symptoms for the past 2 months. Face rash, fatigue, low fever, muscle pain, swollen fingers, Raynauds syndrome, my fingers get red rashes after being exposed to the sun, which is very weird because my skin has an olive tone and I never had any photosensitivity. They say it is all psychological and they want to send me for psychotherapy. wtf. I don't know what to do

@PattisLupusJourney 3 жыл бұрын

Please let me know if I can create a video for you of something you need help with or are struggling with.

@PattisLupusJourney 5 жыл бұрын

Feel free to share in the comments.

@IvanaGirl 4 жыл бұрын

Hi, I’ve been sick for months. Horrible join pain, shoulder pain. Finally I got bloodwork done recently and one of the things in the lupus panel came back pretty high. I’m also struggling to chew and swallow food for past year and a half. The gastro thinks it might be autoimmune esophagitis. And he said something about dysmotility or something. He wants to put me under general anesthesia and do a biopsy but I’m terrified. I have to use water a lot to push the food down. Ugh. Was the rheumatoid factor the only thing that came back wrong in your bloodwork? One of my best friends past away from lupus at the age of 18. I’m 31 now and wondering if I have lupus as well with all of this going on. I do have Graves’ disease so I know a lot of times when you have one autoimmune condition you tend to develop another

@PattisLupusJourney 4 жыл бұрын

@@IvanaGirl hi and I apologize that this is a late reply I didn't get notified. Definitely sound like you have a lot on your plate. It dies sound similar to the beginning of my diagnosis as well. To answer the blood work question: the positive RA factor was the first test that "proved" there was something wrong. Once I was referred to a Rheumatologist plenty of other labs were irregular the sed rate was one that I remember but it really was so long ago I cant remember each test I was 17 at the time. I hope you have received more answers. Feel free to reach out with quest6 here or Instagram Patti'sjourney_

@IvanaGirl 4 жыл бұрын

Thank you so much I haven’t been back to the rheumatologist because I’ve been so focus on trying to find out the cause of this trouble swallowing (dysphasia) issue. I hope you are doing better and I will keep you posted! Thanks again

@PattisLupusJourney 4 жыл бұрын

@@IvanaGirl hope you find answers

@yunassecretrapcareer6106 3 жыл бұрын

Last year in August I was tested for RA because of pain. The only thing I tested positive was for ANA . A first rheumatologist diagnosed me with lupus just based on the ANA. I got a second opinion and the second rheumatologist said no autoimmune issue is showing in labs. She said the ANA can show positive in anyone. 😒 so Im right back where I started. A whole year after and all labs showing negative still. But I do get bad flares since the first rheumatologist put me on generic plaquenil and then took me off. 😞 I’ve been trying to eat healthier but it’s hard . I have anxiety and just thinking about if I do or if I don’t have lupus stresses me out so much.

@PattisLupusJourney 3 жыл бұрын

That is frustrating. The ANA test can be so mis leading with results. There are false positives and some test positive one month and negative the next. I know several ppl going through the same thing. Google Lupus diagnostic criteria that might help to see all the criteria used to diagnose Lupus. Share your frustrations with your Rheumatologist and GP if you don't feel confident then ask your Gp for a second opinion from a diff Rheumatologist.

@PattisLupusJourney 3 жыл бұрын

Stay strong and fight 💪

@yunassecretrapcareer6106 3 жыл бұрын

Patti's Journey well that’s the issue. I read there was 11 criteria and u must show ATLEAST 4 of the 11 to be diagnosed. I was only having pain and fatigue. And very mild swelling in my fingers. But the first dr said yes definitely lupus and the second Dr said nope. I honestly feel like my body got worse when the dr put me on immunosuppressants and then took me off. Even then I have expressed the issues to my now rheumatologist but she looks at me like I’m a hypochondriac

@PattisLupusJourney 3 жыл бұрын

@@yunassecretrapcareer6106 stay strong keep a light of your symptoms and advocate for yourself. Even if its not Lupus you don't feel well and want answers. The frustrating part is sometimes diseases take their sweet time time to show what they are including Lupus. You are your best advocate stay strong.

@yunassecretrapcareer6106 3 жыл бұрын

Patti's Journey Thank u for your help.

@shirleytaylor6983 3 жыл бұрын

I think I have lupus, but I am 71 and so many physical things have gone wrong I am side tracked by the one that ends up forcing me to stay home (long even before COVID).My brother has scleroderma. I've had many blood tests but what factor should I look for? Help would be very appreciated. Shirley Taylor.

@PattisLupusJourney 3 жыл бұрын

Hi Shirley, not know ing or having a diagnosis is frustrating. Do you have a general doctor that you trust ? My suggestion would be to talk to them if they can do initial labs that they feel correlates with your symptoms. If your brother has Scleroderma which is also an autoimmune disease ask for a referral to his Rheumatologist . As for specific test I am not a doctor and your doctor would know what best for you. Me personally some basics that my Dr. Orders for me is a ESR/sed rate to help monitor my inflamation.. Other test that measure my disease activity are c3, c4, ANA, CBC and at different times different tests are done as lupus has affected my kidneys. It really is personalized. I wish you luck on your journey stay strong 💪

@belvinsmith1891 3 жыл бұрын

@Nono-jf5bc 4 жыл бұрын

Hi luv new sub have had ra lupus and fibromyalgia drs fire me for being proactive in my care my saving grace is my husband who takes care of everything thing as of almost 12 years of this i'm still standing but i'm truly am doing no western medicine

@PattisLupusJourney 4 жыл бұрын

Do you have Instagram ? I would like to learn more of your story

@PattisLupusJourney 4 жыл бұрын

I am @pattisjourney_

@Nono-jf5bc 4 жыл бұрын

@@PattisLupusJourney .no luv me don't but to be able to have a nice chat oo that sounds so nice oo lord me have lost all me friends this time around dont ever give up this fight luv your good at making people feel beautiful in your way of talking your amazing lady

@PattisLupusJourney 4 жыл бұрын

@@Nono-jf5bc Thank you for your kindness

@Nono-jf5bc 4 жыл бұрын

@@PattisLupusJourney luv thank you for your kindness to me remember your beautiful smart and so very strong may this find you on a good day soft hugs many Irish blessing

@lindsaymendez7071 2 жыл бұрын

The music is loud and distracting

@destany9591 4 жыл бұрын

I'm 26 CT scan showed degeneration in a joint. For 8 months I've been having odd symptoms that's gotten progressively worse. Pain, body aches, fatigue, numbness/tingling in limbs. Worse vision. I was tested for RA factor & ANA for Lupus. My numbers were normal. As my symptoms progressed I am seeing a rheumatologist he's re-testing me.but I haven't been diagnosed specifically. I am sad because my job is hanging by a thread. I'm about to lose it due to my body hurting so much. I have to leave my shift early.

@PattisLupusJourney 4 жыл бұрын

I am glad you have a Rheumatologist. It really is challenging when you know something is wrong with your body but no proof. Unfortunately that is very common and why it take people so long to get and official diagnosis or "name" to call the symptoms. Be persistent advocate for your self. Keep a journal of your symptoms date time and what your doing when they happen. Rest when you can . As far as your job is there another position you can switch to ? Stay strong and fight for yourself you got this 💜💪

@destany9591 4 жыл бұрын

Patti's Lupus Journey Thanks so much!!!! There's no "calmer" position I can switch to. My checks are suffering because I'm only able to work for 2 to 3 hours at a time. Due to the pain, my mental health is declining. I'm getting really bad anxiety. My mind is so stressed.

@destany9591 4 жыл бұрын

Patti's Lupus Journey Before my life came to a halt, I was always an active person, love my job, never missed a day at work, college student. I live alone by myself with my cat. I have really good friends. My life has been awesome! When I first started having odd things happen to me it never interfered with my life. I would always try to justify it. Leave it in the back of my mind & move on. As months have passed, my friends have noticed my struggle. I've gotten so thin they worry about me becoming under weight. They've noticed my pain flares.

@destany9591 4 жыл бұрын

I went to a regular doctor today. I got some distraught news. You know how they test your refkexes? They hit that rubber thing on your joints. My left arm and right leg failed the neurological exam. The doctor thinks i need a lumbar spinal tap to check for MS or ALS.

@PattisLupusJourney 4 жыл бұрын

@@destany9591I hope the bad news helps give some answers