My Lupus Diagnosis Story Part 2

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Күн бұрын

*This video is Part 2 to my diagnosis story with a chronic illness known as Lupus. To see Part 1 Click Here: • My Lupus Diagnosis Sto...
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.
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Пікірлер: 35

@lindasplaylist100 2 жыл бұрын

Thanks for sharing your journey with us.

@elizabethsamuel2894 6 ай бұрын

I have a lot of the same symptoms but still not diagnosed 😢

@PattisLupusJourney 4 ай бұрын

This can be frustrating!! Sometimes you need to keep detailed records if symptoms and labs. Treating the symptoms and overtime the diagnosis becomes more measurable in different tests it's a Journey❤️

@jamluna8024 4 жыл бұрын

We are currently waiting for my daughters AnA results to come back. She has been thru so much the last few years. Everytime I took her to the dr, they would push it off as a stomach bug, the flu, virus, ect. Finally a new one came in that listened to me when I asked for certain test to be done. From that we found out my 14 year old at the time had a 9.26 cm cyst on her ovary. She was immediately sent to a gynecologist. Within a week the cyst was up to 9.76cm. He did surgery the next day. He told me it would take a hour for surgery. The hour came and went by with no dr coming out. About 15 minutes later he comes out and pulls me into the hallway and tells me while I’m surgery he also found a terratoma tumor. I lost it. I heard the word tumor and so many things ran thru my head. Cancer runs thru my family at a high rate. But the dr assured me it was no cancerous and she was fine. So skip a couple months later and all of her symptoms are back. So back er go to the dr. Thinking she has another cyst, but there’s no cyst at all. So more testing done. Come to find out her gallbladder is only functioning at 12%. So less then 8 months after the first surgery, she is having her second. Now skip a few months later and we are back in the same boat. The symptoms are back again. But this time I asked for a thyroid test and a lupus test. Along with her 3 month A1C bloodwork. And I also asked for a cat scan of her stomach because that’s where most of the pain has been. The only answer I have really gotten so far is that the cat scan showed inflammation. And that they are hoping that they will have the other test back on Monday so we will have all our answers. My daughter is 15 now. Having a rough time dealing with not understanding what is wrong with her. Heck momma and daddy’s having a hard time too. On top of that she has also been diagnosed with keinbock’s disease with a ganglion cyst in her left wrist. I just want answers. I want to be able to take some of the pain away for my baby girl. Thank you for sharing your story

@PattisLupusJourney 4 жыл бұрын

Reading this my heart goes out to you being a parent myself now. I was 17 when diagnosed. You sound like an amazing advocate for your daughter keep it up. It sounds like you have doctors that are listening to you I am so glad. Keep in mind If it is Lupus it can take time to diagnose and a positive ANA depends on other factors as well. Lupus is known as a fingerprint disease, because it presents so differently in people. As with any disease try to focus on one day at a time. Yes it is hard. Can I reccomend you keep a journal or create a firm on your computer. Including the date. And keep track of every test, Dr., symptom and medication. While medical records have come a long way in the digital format sometimes when you see Dr. On a different system it takes them longer to look up info. If you have record of that info you can help fill in questions without having to wait for that doctor to get the info and then its it's usually a nurse that gets back with you. This way if there is more questions you can ask the doctor and less delays. I pray you get your answers and your daughter gets relief.

@jamluna8024 4 жыл бұрын

Patti's Journey so are you saying I should have paper forms of all of her records with me too?

@PattisLupusJourney 4 жыл бұрын

@@jamluna8024 no that would get overwhelming. Just a brief outline of start and stop of meds, symptoms and tests, advice from Dr.s appointments. I find it helpful when your going from specialist to specialist. They may not have received a not from the other doctor you can update on what happened at the appointment. A medication might have been changed to a different one because of side effects. You will have that info to update the medication list. A new doctor might suggest getting a CAT scan and you can say we just did that or she did that 6 months ago and the results were... which allows the new doctor to change his plan or continue but know it might need to be billed differently or he just needs to get the results and will know the date and location the test was done because you can tell him. Does this make sense ? My intent is not to overwhelm you but help. Would it help if I did a video ? I can create a printable form if that will help ?

@jamluna8024 4 жыл бұрын

Patti's Journey I carry a updated paper with all of her medication on it. She takes 15 different medications already. Although I might not remember the exact test names that has been ran I know the description of each test she has had done and where. She is my only child. My mother in law and sister in law both has lupus and I’m trying to use that to help me be ok in case it does turn out she has lupus. In a way I will be glad we have answers finally but then in another way I don’t want her to go thru more pain, more dr visits, more health scares, ect. I just want to be able to protect my child.

@PattisLupusJourney 4 жыл бұрын

@@jamluna8024 you are more then on top of it 👍 keep doing what your doing. I hope you get answers soon. Feel free to ask any questions I an here to help if I can that is why I started this channel.

@mandygarcia8146 4 жыл бұрын

Hope your doing well I just had my scope I have gerd and diverticulosis . On meds for stomach

@PattisLupusJourney 4 жыл бұрын

Thank you, I am currently in recovery mode from a little set back but overall I am good. Glad you got a scope hope the meds help

@eloharrison5879 3 жыл бұрын

Finally got rid of My Lupus 💃💃

@margarettaraji2979 3 жыл бұрын

I Just got rid of My Lupus thanks to dromoye3@gmail.com for my successful cure 💃💃

@BriannahHoward Жыл бұрын

Can I ask what your LAB/blood work numbers were? In a CBC? Red blood cell? White blood cell? Immature cells? Potassium? Sodium? Any would be helpful ❤

@erinbair859 4 жыл бұрын

Hi Patti!!

@PattisLupusJourney 4 жыл бұрын

Welcome to my channel 💜

@eloharrison5879 3 жыл бұрын

Finally got rid of My Lupus 💃💃

@margarettaraji2979 3 жыл бұрын

I Just got rid of My Lupus thanks to dromoye3@gmail.com for my successful cure 💃💃

@eloharrison5879 3 жыл бұрын

@@margarettaraji2979 Dr Omoye also got me cured I'm really happy I pay the God Lord continue to bless her works 🙏🙏

@zuzasinde8748 3 жыл бұрын

hi how are u i have so mony sumptom i lost so much waight i hop i dont have this

@PattisLupusJourney 3 жыл бұрын

Hi Zuza Sinde, I am good. Sounds like you are struggling and on a journey looking for a diagnosis. Keep a journal of your symptoms at take it with you to appointments. I understand you don't want this. All diseases affect everyone differently stay positive. I hope you find your answers.

@eloharrison5879 3 жыл бұрын

Finally got rid of My Lupus 💃💃

@margarettaraji2979 3 жыл бұрын

I Just got rid of My Lupus thanks to dromoye3@gmail.com for my successful cure 💃💃

@chitrakathirarasu1560 3 жыл бұрын

your diet please?

@PattisLupusJourney 3 жыл бұрын

I wish I could reply to this comment and say I found the perfect diet. Sadly I am on the Neverending struggle of discovering diet that makes me feel great and lose weight. Thst includes easy preparation I am still on the journey.

@chitrakathirarasu1560 3 жыл бұрын

@@PattisLupusJourney same story going on in my case also...I have lupus hashimoto thyroiditis and RA...

@eloharrison5879 3 жыл бұрын

Finally got rid of My Lupus 💃💃

@margarettaraji2979 3 жыл бұрын

I Just got rid of My Lupus thanks to dromoye3@gmail.com for my successful cure 💃💃